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The life & times of the eternally evolving, erratic, eccentric expatriate (who loves the color violet)

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Whatever Gods May Be

It’s 6:30am as I start to write this entry, and I am already at work.  Not that I have to be. Not that my students won’t arrive for another hour and a half.  But here I am. I can hear the clock ticking softly in the background of my classroom, feeling introverted and introspective.  I want to take advantage of this moment of solitude to write. Hence, I write…

 

I really am in a writing kind of mood this morning, which is a state that is lamentably becoming more and more difficult to find and to embrace.  With all of my responsibilities and obligations, sometimes I admit that I lose focus of what my priorities ought to be. As I take these moments to take a deep look inside myself, it becomes clear: My greatest priority is Seba.

 

It’s sort of a twisted paradox.  On one hand, Seba truly is my pride and joy.  He has given me a purpose in this life, he has been a reason for me to keep going in moments when I just want to collapse and give up on everything.  He is such a gentle and kind soul, even at just five years old.

 

Yet on the other hand, I acknowledge that more times than not, I don’t balance my priorities well.  I don’t get it right. I didn’t kiss him goodbye this morning as I left for work, though he was sound asleep. I didn’t put him to bed last night, either.  Fede did that.  With my crazy work hours, it’s like that most of the time.

 

I also get frustrated with Seba and his lack of speech.  It drives me batty that I cannot communicate with him like a “normal” child and have a conversation with him. I really don’t know what is going on inside his head, what he is thinking or feeling.  

 

I silently want to curse whatever Gods may be for giving him autism.  

 

There, I said it.  

 

I love him no less than if he were a neurotypical child, but my love for him is tainted with feelings of guilt, frustration, and worry.  I’ll be honest: I experience times when I can’t help but feel sheepish and apologetic when I have to explain to a stranger who has asked him a question that he has a speech delay, that my boy doesn’t know how respond to them.  

 

The other day, Fede and I agreed to see an autism guru who charges a *very* hefty, out-of-pocket fee to observe Seba and give us some guidance and further resources.  Never mind the fact that the form she gave us had all kinds of semantical and orthographic errors, or that she gives the vibe that she seems more intent on making a quick peso in an hour’s time than anything else.  I never want to look back and feel the guilt that I didn’t try and do absolutely everything possible to help my son overcome his situation and flourish despite his autism. It puts us in a tight spot, indeed, but I owe it to Seba to at least try.

I fear that his window for meaningful language acquisition is starting to seal off, that he may, in fact, never be able to communicate at a normal, age appropriate level.

 

I worry that he may never be able to go to a university, live independently, or experience romantic love.


I obsess so much about what the uncertain future holds.  

 

Yeah, I know, it’s far too early in the morning for this.

 

I often wonder to what extent Seba understands the world around him.  He seems so observant, mature, and wise in some moments, yet so far behind his peers in so many other ways.

 

Nevertheless, I know that I have to also objectively look at myself and realize that I’m not exactly a neurotypical, run-of-the-mill Jane Doe, either. I have my numerous quirks, my fixations, my own special needs. I have my moments when I, too, just need to be alone, in a world of my own.

 

And I turned out… okay.  I guess.

As I have wondered before, if my child is such a healthy and happy and loved little boy, perhaps it’s not Seba who has the greater problem here?

Nothing more to say for now.

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My Open Letter to My Son on the Autism Spectrum

Dearest Sebastian,

 

The other evening, I watched you intently observing the sunset on our balcony.  As usual, you didn’t say a word, but you had such a pensive and serious expression on your face.  As the last westward shining rays of light of the day cast your elongated shadow on the balcony floor, I had to wonder what was going through your mind at the time.  

 

I have known for some time now that you have never been a typical child.  You are far too sweet and innocent to be “typical.” But with your special traits has come an unexpected set of other characteristics; among these, a notable lack of words.  

 

For a long time, Daddy and I were unsure of the reason for your speech delay and your other quirks and nuances.  Finally, we received an answer that left us with even more questions: autism spectrum disorder (known here in Argentina as trastorno del espectro autista).  To make things even more confusing, it was a special kind of ASD: NOS (not otherwise specified).

 

Especially at the beginning, it was hard, so hard to understand and to accept.  After all, you are my precious boy, and to know the challenges that this diagnosis imply that you will probably face scares me.  But it is something that we will face together as a family.


It is also difficult to come for me to terms with the unplanned, the unpredictable, and the unexpected that ASD brings.  But what’s that line from Mommy’s favorite song? “Life is what happens to you when you’re busy making other plans.”

 

You are different from your classmates, but that is not necessarily always a bad thing.  You don’t tattle-tale, you aren’t rude, you’re not selfish, you don’t have a mean bone in your body.  You are simply Sebi – Happy and funny, innocent and as sweet as can be.

 

I am not upset with you for having ASD; rather, in my moments of frustration, I am upset with myself for my own shortcomings. There is NOTHING “wrong” with you.  You are who you are and what you are, and I love you because of this (not despite it). I have to be perfectly honest – I am desperately afraid of failing you. All I want to do is for you to feel loved, protected, and proud of who you are.  I want you to know that Daddy and I will always have your back, we will always love you and support you. But sometimes I fear that what I do is not enough.

 

Nevertheless, you have come and continue to come such a long way from the Sebastian that I knew a year ago, a month ago, or even yesterday.  Witnessing you evolve into the wonderful boy has been incredible, and it makes me realize how lucky I am to call you mine.

 

Do I wish you were “normal”?  I have to be completely honest; even though I wish you could speak and understand more, I love you just as you are, more than you’ll ever know.  And what is normal, anyways? What does that even mean? Mommy is certainly not normal. Daddy is not normal, either. I only want you to be Sebastian.  Perhaps the path we will have to take to get to where we want to go may not be straightforward and simple, but my hopes and dreams for you are still the same.  


I love you, Seba.