The first time I said “my child is autistic” I remember feeling as if I was in a movie where I could literally see the words floating in the air once they escaped my mouth…
And, God help me, I wanted to snatch them back.
I remember the person on the phone saying, “I’m so so sorry,” and me saying, “Its fine, I deal.” Secretly, in my mind, as if in an Ally McBeal episode, I saw myself reaching through the phone and wanting to pummel them because of the deep pity I could hear in their voice.
I remember the second time I said it.
When I said “my child is autistic” I said it so fast, it was as if I were whispering a secret that I didn’t want to be caught sharing. I glossed over it to move on to a point about lord only knows what, but I remember the guilt I felt.
Let me explain. I could never be ashamed of my son. He is the smartest, funniest, most loving and caring boy is the galaxy. Many will attest to it.
But that word. That. Damn. Word.
There is something about it that made me say it hushed, rushed and as if I would be jailed for the mere thought of it.
The fourth, fifth and sixth times, in truth, I don’t remember. I know I felt a little more at ease with the look from people that didn’t know and those that did. I practiced a bit with my closest friends.
Or at least now, in retrospect, I know it was practice.
I know it may seem odd that I am counting but the truth is that this is hard. This is the hardest thing that I will ever do in my life. For any parent, it’s hard raising a child.
BUT THIS IS REALLY HARD.
In fact, I couldn’t imagine anything harder than this.
It. Changes. EVERYTHING.
And you are angry, sad, confused and feeling more alone than you already do… sometimes.
It’s as if they said forget the rule book because we don’t even know what rules are.
I will admit that even to this day, I still find I have to overcome a lump in my throat (smaller than what it used to be but still there) when I say it out loud.
Now don’t get me wrong, I’ve come to “terms” with it in my heart. But, I will not go so far as to say it gets easier. It doesn’t. I’ve never been one to sugar-coat so yes it down right sucks sometimes.
But what makes this entire thing OK are the freaking fantastic, breath-taking moments I am lucky enough to experience every day that are out of this world different when seen through his eyes.
So no, I have not yet reached ten times saying it out loud.
Saying that my child is autistic, on the spectrum, sensory processing disorder or any of the other ways they classify my son.
What I can and have said more than a million times is “I love you, my son.” And it will be said an infinite number of times more. I won’t ever struggle with that or have a lump in my throat of any size as I shout it from the rafters.
My son, my little genius who is obsessed with numbers and letters, has been counting to 100 since two and a half, and now, at age three, can spell and write, will know his mom was honest. This was hard but she did the best she could and was honest about it. And that, I love him fiercely. All traits that I hope he will have when he is a young man with a career and family.
Yep, that kid of mine… he’s pretty amazing. I can only hope to catch up to his level of awesome. In the meantime, I’ll just keep counting…