Everybody's Boy

I have a secret.

It sounds so foreign to me now; one of those memories that you squash so much for so long that when you finally unearth it you wonder if it it’s even true.

Except it is true, and that truth is part of me, of my history, and consequentially of who I am today.

You see, I didn’t want children.

(and it gets worse)

I didn’t want children because I didn’t like children.

I kind of envisioned myself a career woman, independent, possibly involved with some emotionally unavailable, hipster-artsy guy that would never marry.  A small flat in some nameless city.  With cats (dogs are too needy).  Free to stay up all night watching television shows about forensic science while eating Chinese food in bed, waking well past 11 on the weekends, working fiercely during the week to get ahead.

I didn’t know a lot about kids, having grown up an only child.  I was incredibly shy around my peers growing up.  Hiding behind my mother on the chance we ran into a schoolmate in public.  I preferred spending time with her friends.

It’s just that kids are so transparent…so what you see is what you get…and I have always been so “what you see is exactly what I want you to see and no more”.

When I was 23 something happened that changed how I felt about children.

It’s not the time to tell that story, but I plan to soon.  It needs a lot more crafting and soul-searching than I can manage at this moment.

But you should know that this event changed me in every way imaginable.  Without this event, there would be not Everybody’s Boy.

For that, despite the unpleasantness of the experience, I am eternally grateful.

In fact, by the time Gus and I met, I only wanted children.  Three –  maybe four – a whole Duggar-load if the years were on our side.

I didn’t fear children anymore.  I saw them and the world through them in a way I never dreamed possible.

Then Everybody’s Boy was born, and though in those early years I struggled to find my place as his mother, I eventually embraced my new role.

In the years since I’ve become so emotionally enmeshed with this perfect little soul that it is impossible to comprehend my life as anything else other than “Mommy”.

Like all mothers, every single thing I do in my life, is strategic in ensuring his future has every opportunity availed.

I don’t think it’s any more or any less that way because he has Autism.  I’d like to think that I would’ve been the mother I am today even if he didn’t  have special needs, but perhaps I’m a little more compassionate, a little less quick to anger, and a lot more patient because it’s the only way I know how to be.

I cannot imagine what life would’ve been like if I’d stayed on the trajectory I was on 10 years ago.  I’m glad I won’t have to.

And while there will be no Dugger-sized family reunions in our old age, I firmly believe that if I were to only have one chance at bringing another person into this world – I couldn’t have been more fortunate that it was him.

Because for everything I thought I would lose by becoming a mother, I’ve gained others ten-fold.

When Everybody’s Boy tells me that I am his “specialist Valentine ever” – I can’t imagine that any other experience could ever trump that.

I still struggle to make small talk with neurotypical children, but thankfully in my world, those opportunities are few and far between.  ;-)

I keep writing and rewriting this first paragraph.

I need to write.  It’s been a while.

I need to share.  There’s been a lot.

But I’m really tired.

Not the “Wow, I could go for a nap, tired.”  Though, there’s that too.

But the kind of tired that only parents of children with special needs know.

I call it battle fatigue.  Not out of any disrespect for our military friends.  But because I can’t liken it to anything else.

Over the past month we have watched out child practically shut down and deteriorate before our eyes.  It started with a long winter break, as setbacks often do, and spiraled into “scary crisis” during the first two weeks of school.

Perhaps it was complicated by the change in Peter’s school environment.   Relatively minor, we thought, but enough to absolutely knock us all on our backs.

In the general education class he began to act out.  Climbing on desks, screaming, crying.  Biting.  Hitting.  Running.

His team began adding back supports, and called an emergency IEP meeting.  He moved back to the self-contained classroom.  Even in that classroom full-time he continued to deteriorate.  Days of nothing but crying and screaming…and running.  Did I mention the running?

Meanwhile things at home were taking a similar turn.  He was inaccessible.  Shut down.  Extremely anxious.

Since finding out that we are losing his  insurance I’ve tried to find a giant pot of money so that we don’t have further disruptions in his routine.  I spent my days fighting the Autism.  Trying to exorcise the giant intruder from his little body.

I spent my nights collecting letters from the community and preparing a request for emergency assistance to the state, working with his therapy team to trouble shoot, and when I slept – fighting terrifyingly graphic nightmares.

It’s like waiting for a fever to break.  When your child is “cycling”.  You know that it will loosen its grasp, at least that it always has before, but you don’t know when or how much damage will be done in the meantime.

I don’t know what it’s like to be a parent to a child without Autism.

It’s just different.

It’s horrible.  It’s exhausting.

It’s a war.  A series of battles.  Except you’re always losing.

You can never do enough to defeat it.  You can only hope to keep it at bay for a while – to offer some respite to the precious child you love more than life itself.

You can write letters and blogs and make phone calls and pay thousands of dollars for therapy, and your work may help you win the battle, but you can be absolutely certain that there will be another…and another…

I wish I could find the presence of mind to really write about what the past month has been like.  What it’s been like for Gus and I, for our parents, for EB’s teachers, therapists and friends.  But I’m too tired.

The worst part is, we’ll never know how hard it’s been for our child.  Because he can’t tell us.

The only thing worse than fighting a never-ending series of battles for your child, is watching your child fighting those same battles, only without the solace of being able to help ease his pain.