In Memory of Alex

It's been a reflective week for me in thinking about being the parent of a special needs kiddo.  I posted on the fb page the link to the story about Alex Spourdalakis .  Alex was killed in his home in an apparent murder by his mother who wrote details of the murder in the note she left.  Alex's mother and caregiver attempted suicide by taking pills, but were unsuccessful.

Alex's mom made national news when she claimed that her son was being mis-treated in a Chicago hospital and pleaded for help to get him to a place that could care for him better.  She contacted Autism advocacy groups who went to Chicago to speak on her behalf.  They found a tired, worn-down mom who was desperate for help and answers.

I watched this story unfold a few months ago, and was shocked to learn of Alex's death this past week.  My facebook status update read :

I've been following this story for awhile when Alex made national news for being restrained and chemically sedated in a hospital. And now the end to the story breaks my heart....for so many reasons. The severe level of desperation is there, and it's real. When I talk about isolation that parents feel who are trying to care for an special needs child,.....this is where it can lead.

I was wrong.  Really, really wrong.

Murder is NOT where it leads.  Alex's Mom did something so deplorable that it's difficult to even speak about.  Not just the murder of her son, but the fact that she refused help.  Alex's father tried to help, the hospital tried to help, alternatives for care were given.  However, Alex's Mom believed that only she could provide the care her child needed and refused any form of help she could get.

I believe her desperation was real.  I believe her exhaustion and her inability to think clearly were real.  And I believe that what she did she justified so easily in her mind that the thought became "normal."    I believe she was swimming in a sea so deep, she was never going to emerge.  And when people kept tossing her a life-line she erroneously thought she didn't need it.

The Autism community is up in arms about this story.  Some have gone so far as to say "understandable."

No.  Absolutely NOT.  Under no circumstances was it/is it/will it ever be alright to murder your child in cold blood.   She planned it.  They got the pills.  She slit his wrist so deep she almost severed his hand.   She wiped the knife clean when she was done and put it back in the block.   Let me say that again.  She wiped the knife clean.  The caregiver that was a part of this also killed the family cat so that it "didn't have to go to a  shelter."  Never was this Alex's fault, and never is anything like this "understandable."

It's taken me a week to figure out what bothers me about this story.  Yes, without a doubt, the murder of Alex was gruesome and should never have occurred.  These two women did something horribly wrong, and there is no excuse.  This is not what Alex deserved in any way.

Here's what bothers me.... the other stories that will go un-noticed.

There are many (more than you realize) parents out there who are at the end of their rope.  The stress and constant care that a special needs child requires can be daunting and more than overwhelming.  I've watched it unfold in the care I give to families.   Chronic illness comes into a family and destroys it from the inside out.  Relationships are strained, marriages collapse, family dynamics are shattered.   I'm not sure that the community or the services available help parents and caregivers in a real way.  (For the record, I don't think the system failed Alex's Mom....I think she chose to ignore it).

My Mom and I had a discussion this week about this subject and I will share what I wrote to her in an email.

" I hear it a lot from parents who have special  needs kids and they grow up to be special needs adults.  It's a fear of mine as well.  It's fine to let Nea pee in a diaper now...she's 3.  That's going to not be okay when she's 7 if she isn't able to do it.  And what happens when she's 16, 23?  There's a special needs woman who takes swim lessons where we do.  Her mother (has to be in her 70's) is there with her all the time.  She helps her in the shower, she blow dries her hair, etc.  It's touching and scary all at the same time.  No one loves our kids like we do....and we worry constantly about who's going to watch out for them if something happens to us or when we are gone.  Building Nea's network has ALWAYS been my priority.  And we are lucky.  Not every parent has that network to lean on."

And there lies the crux of the matter.   The network that parents need is crumpled and fractured or may not even exist.  Some special needs kids and their families are so isolated it is debilitating.  These families have to be able to be in places/events where it's okay to spin in circles, it's okay to run away from Uncle Joe in fear, it's okay to hide under a table, and it's okay to meltdown into a puddle of mush screaming because your hamburger was cut instead of given to you whole.  These aren't kids who are manipulating or mis-behaving or being bratty.  These are kids who are trying to cope.  And these are families who are trying to help them.  They are a part of us and we need to do better as a society to embrace them.

The guilt we feel is relentless.  We want to be there for them without fail, but yet if we don't get a break we feel we'll go insane.  And then we feel horrible that we've even had the nerve to ask for such a break.  Nea doesn't get a break from her Autism, it has been and always will be a part of her.

And there is my other epiphany.

 Autism is a part of her.  It's not a part of me.  Meaning, I  don't have the skill set to live in her world like she does.  Just like she doesn't have the skill set to live in mine.  We work towards middle ground.  That's what these endless hours of therapy are about.  She's learning about "Non-Autistics" and how single minded we can be.  She's learning about "Non-Autistics" and how silly we are for not getting sheer joy out of endless 360 degree spins while naked.  I will admit, there are times I find it more than frustrating and more than maddening and yes....I lose my cool.   And quite frankly, so does she.  We are Muggles and Wizards trying to figure out the common things that we know and understand.

It's not easy.  But it is our journey and I would not change one day of it.















Alex Spourdalakis, you have taught me many things.  Rest in peace, sweet child.  Rest in peace.