Bedtime is my most enjoyable maternal interaction of the day.  It’s a time when Peter is comfortable enough in his routine to allow himself to relax and we have the most interesting “conversations”.  Tonight we counted to twenty in Spanish and English, after I did funny dances all over his room.  Peter laughed and requested “More Mommy shake it like a Polaroid picture”.   Last March he didn’t even know the word Mommy (or for that matter display such great taste in hip-hop)!

Yes, it’s our anniversary.  A year ago today we arrived in Chapel Hill, with little more than the hope that it must be “better” that what we left behind.  I suppose it was a pilgrimage of faith that turned into destiny, propelled by a healthy dose of naivete, and a splash of idealism (my trademark).  We certainly couldn’t have known that less than two short months later our boy would be diagnosed with Autism, and we’d be positioned perfectly in one of the leading research communities in the world.

What amazes me most is how, somehow, in such a short period of time Autism has gone from something I knew very little about to being the crossroad for so many different avenues in life.

There are times that I worry that it will define us, that Autism will somehow envelope our family, and we’ll forget that it’s just one component of our lives.  Or that the awareness and advocacy mission I’m on will somehow become my, and eventually, Peter’s identity.  For today, however, I’m reveling in the enormous successes of the past year.  After all, aren’t our successes what ultimately define us?

I’m thinking that tomorrow at bedtime, after I amuse Peter with the Electric Slide,  we’ll be working on counting to twenty “en Francais”.

A mother is equipped naturally with the ability to nurture her child.  It’s innate, borne of millions of years of evolution.  Yet sometimes, the very instinct we are bestowed with to protect our most precious gift, turns out to be useless or even detrimental.

Welcome to Autismville, the land where down is up and left is right and they reserve the right to switch on a dime.  Nothing’s a given, nothing is how it seems.  Basically, whatever it is you think you know, you don’t.

I’m not trying to over-generalize here.  I imagine to some degree this is the case with raising any child.  There’s no user manual, no crash course in parenting.  But there is a certain trajectory that typical children seem to take in their development.  Certain “hard and fast” rules that you can tweak, boundless advice that you can choose to pull from (or not).  Generations of “been there done that” to draw from.

When your child is different, those supports are limited.  When you child has Autism those supports are rare.  Not solely because of a lack of resources, but because the Spectrum is so incredibly broad that truly each behavior is different for each child – each situation lends itself to a different solution.  A solution fraught with much trial and error, many tears and indecision and a whole lot of helplessness.

I don’t know why my son cries.  He cannot tell me.  Maybe he cries because he cannot tell me what he’s feeling.  When I try to hold him or console him he pulls away.  The desperateness I see in his eyes in those moments lends to a feeling of helplessness unlike anything I’ve ever felt before.  A mother’s primary responsibility in life is to protect and comfort her child.  My child wants neither from me, at least in the only way that I know how.

I long for my little boy to run into my arms and let me hold him – but instead he runs away – being alone is the only way that he can self-regulate.  It’s the most basic of motherly tasks, a seemingly essential bonding point, that fits nowhere in my world.

Don’t get me wrong.  I am bonded to my son, and I believe with all of my heart that he is bonded to me.  It’s just that in those moments where everything within me is yearning to play “Mama Bear”, I have to take a step back and think about what it is that Peter needs, and the answer is almost unequivocally, space.

As I sat on the floor of his bedroom this evening, with him screaming for Bert, Ernie, Dora, binky, etc…the reality that they could do something that I couldn’t became increasingly clear.  Still, I must believe that my silent presence, holding his hands in mine, provided him some sort of maternal comfort.

It’s been a year, actually on Sunday, since I was gainfully employed.  I can only imagine how incredibly unmarketable I must be, especially in this economy.  I suppose I should be grateful that it doesn’t matter – but some day it will – and what then?

I’ve been focused on the IEP and inclusion and…generally running myself in circles over anything and everything which I have no control over.

That’s what I do.  I try to control the uncontrollable.  I analyze miracles.  I make plans that are impossible to fulfill and then I bemoan failure.

I know this because I am neurotic even about my neuroticism.  That’s true dedication to the art, I’d argue.  If I had the energy to argue with anyone but myself.

So many things are up in the air.  Will Peter get a placement at Frank Porter Graham, the perfect inclusive environment for ANY kid?  If not, will he be able to handle the school system’s “version” of inclusion – glorified Headstart classrooms in my humble opinion? If he doesn’t receive placement in an inclusive classroom is he losing valuable time peer modeling typically developing children?  Or is he growing by having more one on one support like that which is provided in a self-contained classroom?

What would do the least damage to my child?  Why do I feel forced to decide these things 5 months in advance?  I can only imagine what Peter will be capable of by the fall, he’s making huge gains daily at this point.

I guess this is a time that I just need to quiet my mind, relinquish control, and wait.  I suppose I need to trust my instincts and the experts and hope that we are all in agreement.

In the meantime, I suppose I should try to enjoy the little angel nodding off while watching the Wiggles beside me.