At the museum on Sunday we observed an adolescent boy boarding our “chugga-woo-woo” ride. His ears were covered in earphones (but not the kind that play music) and he clearly had that “trapped inside this body” look that we have come to know well. This incited a discussion with Tavi about what Peter’s future will be like.

I have to admit that this is one of the things I try not to think about. Autism is a Spectrum Disorder and each individual affected has a unique affliction. Our therapists (and us) like to believe that Peter will eventually be diagnosed as “high-functioning” as he is certainly presenting that way at this point. But it’s all so “two steps forward, one step back” with this game. And nothing is for certain…ever!

Like any mother, I imagine my little boy going to college, getting married, giving me grandchildren. Or bumming around Europe for a few years if he’d rather. I have the same dreams for him that I had the moment I found out I was pregnant. This may very well be too optimistic, but honestly, I cannot bear to think any other way.

I feel that if I set the bar for Peter at level 5, he will only achieve level 5. Yet, if I fail to set a bar at all and believe the sky is the limit he can only excel. It might be hard to understand how someone who is notorious for planning for even the smallest and most uncertain details of life can have such a laissez-faire attitude about their child’s future. I can only qualify it by saying I really have no other choice. To peruse research with a fine toothed comb would only drive me crazier than I already am and most importantly take away from the work at hand…preventing the worst case scenario we all dread.

Peter is my life’s work now. Raising him is the single most difficult job I have ever had. If I had the energy to “think” at night, I’d probably be able to count a hundred ways I’ve failed him each day. Fortunately, I am so emotionally and physically exhausted I don’t. But then there are moments in the trenches that ground me and fill my heart with so much pride I feel as if I may burst. These “successes” sneak up on me, and I relish them with great anticipation and excitement. Every new thing he does, each and every minor milestone, is a miracle in its own right. Because of Autism I appreciate them more than I ever could’ve imagined.

Yet sometimes I yearn for a “normal” child. I long for that typical experience that defines Mommy in all worlds. To join a playgroup, or bemoan the fact that my child is asking “why” for the millionth time, or that he won’t stop calling my name or clinging to my leg. For a brief while I thought I’d have that someday. I thought I’d have my special Peter, and another little one too.

Yet, sometimes in life we allow ourselves to believe that we have options that do not really exist. For the past six months I have convinced myself that it is my choice not to have a second child. I suppose this should make the coping process a bit less harsh, that I should feel some sort of control or power here because I chose this path. It hasn’t.

The truth is that I didn’t choose this path. I lost the dream of having a normal mother/child relationship on early on with Peter and I rationalized this by promising myself a second chance at finding out what everyone else has. There are a litany of reasons not worthy of listing here as to why Peter won’t have a sibling. The genetic risk involved with Autism is a major one. And I don’t say that because I would love a second child with Autism any less. I say that because I couldn’t bear to carry the responsibility of potentially burdening another precious child with this debilitating disease. I’ve read articles by adults with Autism and while they can find happiness in this world, it’s a very difficult disability to live with.

Perhaps the biggest reason I cannot imagine having a second child is that I don’t think there is enough of me to go around. Peter needs my undivided attention. We have therapy seven days a week and every moment of our day involves active engagement. My ass is already seriously getting kicked!

So, while I’m grieving the baby that never was, I’m also trying to hold on to the baby that is as long as I can. I might not be rewarded with hugs or kisses, or “I love yous” but once in a while he does something awesome like falling asleep in my arms after a long day and I wonder what the hell “normal” is anyway? Besides that infectious laugh, which he incidentally shares with his father is medicine to my soul. I wish I could bottle it and share it with everyone I know. That laugh is going to change the world. Of course, I should expect nothing less from the boy who has already changed mine.

…I had a different life. It wasn’t a happy life, but there were some perks. In my mid-twenties I was married to a diplomat which allowed me some extraordinary privileges. I traveled a good bit of the world, hobnobbed with Heads of State and other self-important people, and had a beautiful house (not a home)on a tropical island of paradise in the Indian Ocean. I had a maid, a gardener and even money.

I’ll spare you, and myself, the obvious “love is more valuable than money”. Money has nothing to do with this. I suppose, however, that what I miss are the opportunities and the blind optimism that allowed me to believe that the “world is my oyster”.

I took for granted that the life I lived would remain intact; that I would leave that life and sail along with the status-quo.

Imagine my surprise when I fell in love with, and married, a pest control guy. The most patient, brilliant and fascinating man I’ve ever met. Most importantly, he loved me, over-priced baggage and all.

It’s been four years on October 30th that we shared our first date. Red Lobster and a comedy show at the Orlando Improv. I found out later that he cashed in all of his loose change to pay for that date. I haven’t left his side since. He’s given me the most amazing life, full of respect and love, and a gorgeous little boy.

Okay, so he’s not perfect. He plays video games way too much, leaves his dishes on the kitchen table, is a huge procrastinator, Mama’s boy and a wee bit moody at times. Taking into account that I am not the easiest person in the world to live with myself, I suppose it’s a fair trade.

I suppose this melancholy is more about me finding my own place in life. Eight months ago I was nourishing a fledgling career in PR. I’d found my niche. I was great at my job and on my game.

Our move to NC was well researched and planned for. Me being a meticulous scheduler and control freak, I envisioned the luxury of a few months off to get settled in our new home prior to taking the next step in my career. I was exciting about living the simple life as “just a Mommy”…for a short period of time.

Enter Autism…every type A’s worst nightmare. My responsibilities as Mommy just got expanded by leaps and bounds. Now I can add special education teacher, inclusion specialist, child advocate, social worker, nurse, therapist and a barrage of other careers to my very eclectic resume.

Ironically, as my resume grows, my resources decline. I’m not just talking about the financial ramifications of cutting our income in half, either. Seven days a week of therapy is simply exhausting. Somewhere along the way, Debby the individual has gone missing. Maybe she’s at the special needs preschool, or at the weekly music class, or (GOD FORBID) lost at the WIC office. Wherever she is, I’m not sure I’d know her if I saw her.

I know parenting any child can cause even the most diverse person to limit their interests. I know this is not unique to parents of children with Autism. I don’t even dare draw a comparison between my situation and those amazing friends of mine who are doing this all on their own. I’m just seriously in the midst of an identity crisis.

I crave a good debate on social issues (and boy do I have fodder)with other grown-ups. I would love to delve into philosophy and the meaning of life with another INfP. I’d like to write a kick-ass op-ed to our local paper about the injustice of the insurance system with regards to Autism (and so much more!). I’d like to tell the college kid that just knocked on my door that “Yes, I would love to volunteer for Barack Obama’s campaign”…but I can’t seem to conjure up that Debby anymore.

I feel over-worked and under-stimulated. I realize the work I am doing is more important than anything I have ever done. I see the fruits of my labor every day. I’m not discrediting that in the least. It’s just that it’s not the way I envisioned changing the world. When I was younger, I saw myself in Africa, holding babies and building schools. Eight months ago I saw myself changing legislation for the benefit of our nation’s children.

Perhaps my path in life is not to change the world myself, but to raise the man that will. I suppose time will tell, and in the meantime the lesson that I’m meant to master is patience and faith.

We quit Gymboree this week. It was just too painful. Not for Peter, but for me. I so much wanted him to have an experience with “neuro-typical” kids, but it’s become my weekly reminder into how different our world is. Peter can’t follow the lesson plans. Yes, they have lesson plans for two-year-olds, very intricate ones in fact. He doesn’t notice of course, that while he’s spinning in circles and finding shapes in obscure structures, that everyone else is “watching the ballgame” or “buying Cracker Jacks” (does the concession stand take WIC?). He’s happy counting balls or reciting from memory the entire script of “Elmo says Boo”. I’m happy with that too. That’s Peter, that’s why he’s awesome.

I’m not so happy, however, when the teacher makes half-assed efforts to include him which pretty much entails “Peter come here”. Yeah the kid with Autism is super great at listening…he’s just been sitting here waiting for you to invite him over. I’m not “hatin” though, I don’t expect them to leave the other 19 kids to cater to us, it’s just not that kind of program. Besides, I’ve become a master of specialized curriculum, and I know that while the other kids are “grilling hot dogs at a tailgate party (yes, they are two) that we are counting the hot dogs or spelling H O T D O G, or doing the hot dog dance (that’s Veggie Dogs, thank you very much), but I digress. I’m begging the question. Why are we spending $70 dollars a month for nothing?

I’m also not so happy with the other parents “I pity that woman” stares or the “tsk, tsk, tsk” when he rips out a clump of my hair or bites me because I am trying to get him to participate. I’m sure I infer a lot because I am expecting that they are judging me, but either way, it’s not a fun feeling.

Still, I have to mourn Gymboree, Peter started when he was 9 months old and it has been a mainstay in our lives for almost two years. The teachers really do love him, despite that they are woefully inept to teach him, and everyone has always been wonderful. It’s just the first casualty of many that we’ve outgrown. Or has it outgrown us?

I like this guy, a lot. I believe he is sincere, passionate and, perhaps most importantly, a man of his word.

I wrote to Senator Biden after last night’s debate. During the debate Peter began to cry, I went upstairs to calm him, and when I tucked him in I said “Mr. Biden cares about you and he’s going to help”. He smiled and said “Okay, Bye-bye”. I want to believe he understood.

I suppose that a lot of the world sees people like me as too idealistic and naive…and if that’s the case…so be it. I don’t want to become a cynic. I’m happy believing in something and someone…because ultimately I can’t stop having faith that our world is inherently good.

I hope that Senator Biden reads my email. I imagine he’s pretty busy these days, but since Peter cannot speak for himself (yet) it if for me to be his voice.