“When did you know?”
It’s a question that I’ve been asked several times since my eldest son Justin’s autism diagnosis fifteen years ago at the tender age of fifteen months. I don’t have just one answer for this question however.
I knew of course when the kindly developmental pediatrician told me he had PDD, was too young for a formal autism diagnosis, but I knew.
I knew a month earlier when our not-so-kindly pediatrician shoved a bunch of articles with the word “autism” in the title and practically shoved me and my baby out the door at the end of our appointment.
But truly, when did I really know? I knew at six months when he kept spinning everything in sight, still wasn’t sleeping, was so unhappy so much of the time.
I knew despite everyone telling me he was so young, he would be okay.
To me, back then, “okay” meant not having autism, or having such a mild version of it that he’d still have all the trappings of a normal life- independence, love, friends, a job.
He will never have any of those things. And believe it or not, I’ve mostly made my peace with this.
I don’t really see another choice if I am to live my life to its fullest and be the best mom possible. To accomplish those things, there is no other way for me to live with it.
And to tell you the truth, even with severe autism, at this point in time he is okay.
Sometimes, he’s even great.
Do I wish things were different? Despite making my peace there will always be a part of me wishing he will have the myriad of adult choices his brother will have. I know I’ll never fully let that go.
But I also know that way back when he was still ensconced in my womb my constant mantra was please let him be happy, and healthy. To my everlasting delight the boy who finally likes vegetables is healthy, and most days I see evidence of happy too.
A part of me will always mourn what could have been.
Despite this, I continue to have hope. I have seen several friends navigate the murky post twenty-one waters with their children, and so far, so good. I am five years away from this but of course (!) I’ve begun thinking about his choices, what opportunities he’ll have to live his best life possible.
And to my delight, I’ve found several opportunities that just might fit the bill.
None of us knows what the future holds for our kids, or for us. But it is so important to keep the “hope for happy” alive, to acknowledge that his story might not resemble anything I had planned, but might be wonderful for him anyway.
And as he continues to grow and change and become a man, I will do just that.
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