Denial. You think of all the reasons your child can't possibly have anything more than a slight speech delay. You balance every trait that screams/whispers that he's on the spectrum, with one that makes it seem impossible. He's just stubborn! He's so smart! He's so loving! You observe, you pay extra close attention to everything your child does in the hope that it will provide you with the answers you seek. You turn to the internet -- you scour checklists, read through forums, read the comforting and the terrifying. You try to tell yourself that you're over analyzing and seeing things that aren't quite there, but part of you thinks they might be right.
Eventually, you suck it up and make the appointments. You spend the money you don't really have to get answers you don't know if you're ready to hear. You do it because you want the best for your kid, and if you don't do it, nobody else will. You do it just so that you can tell everyone that, no, there really isn't anything seriously "wrong" with your kid. So you swallow your own feelings and just get it done, because honestly, YOU need answers and deep down, you think they might be right.
You meet with the Doctors & with the Social Workers. They observe and ask an endless amount of questions, many of which you never even thought about, all of which point to either yes or no. Is your child unusually obsessed with anything? Does your child show a wide range of emotion? Is your child aggressive? Does your child use at least 5 words a day, every day? Does your child do any strange motions with their hands? On and on and on and on. You start the meeting hopeful that they'll assure you you're child is perfectly normal, but that hope slowly and surely disappears. Part of you will never stop hoping, but deep down, you know they're probably right.
They tell you that although the official diagnosis won't be ready for four to six weeks, they feel confident that your child will score in the moderate range (on a scale of one to ten, mild to severe). This is when the shock & numbness set in. You've heard the information, but you can't quite begin to process it yet. If they have to be on the spectrum, mild would be best, of course, but at least it isn't a 9 or 10, that would be worse, right? They tell you you're lucky -- it could be much worse -- at least your kid is loving and non-aggressive. Lucky you. You ask the only thing you can think of, (even though you know there is no cure & it's a way of processing) "Will he lead a normal life? Will he get better?"
Oh the look they give you... like they want to hug you on the spot. They've been right where you are and they want to tell you that everything will work out, but they can't. There is no way they can tell you if you're child will ever hold a conversation with you, excel in school, get married, or live on their own. All they can do is offer an empathetic ear, the right numbers to call, and a handful of flyers. Maybe you cry right then, but more likely, it comes later. You make it through the building, into the car, and down the street before the tears jump from your eyes. You try so hard to be strong, to hold back, but it's useless. You feel helpless, guilty, angry, sad, overwhelmed... you want to hold your child and never let them out of your grasp and you want every single person on the planet to go away, just for a little while. You want to be alone, you want to mourn, you want to process... you want to lock yourself in a small closet and cry and scream and push all of the negative from your body in one angry swoop.
You try not to blame yourself, you try not to think about all the what-ifs, but there is no conclusive evidence that can tell you that something you did while pregnant didn't, in fact, wire your kid's brain differently. You try, but there will always be that nagging bit of guilt in the background. Did you do something to cause it? Was it that sushi you ate? The half glass of wine? The crippling depression? The Prozac you took just so you could get out of bed every day and force a measly 500 calories or so down your gullet? Could you have caught it earlier? How did you not know? Could you have done more? You must have dropped the ball somehow.
You mourn the life your child was supposed to have. Life was supposed to be relatively easy -- that's the way it works. You realize that your child is 100% the same as they were the day before their diagnosis, but you see them through a different lens and come to the realization that the things that come easy to most people, will be a struggle for your child. They'll struggle to talk, struggle to understand emotions, struggle to regulate, struggle struggle struggle. You're so god damn angry that life is going to be so difficult for someone so loving, smart, funny, curious... somebody so perfect. It's not fair.
It's not fair.
It's not fair.
But who has time for that? Not you. You give yourself a few days, maybe a week, and then you get your shit together. You move past your feelings, take a deep breath, and dive in head first.
*I don't need or expect any sort of reader response -- I know it's kind of an awkward/sensitive subject for someone to talk about on their blog (especially one that isn't a "mom blog") -- I just needed to get it out there into the universe*
I found this article by Brenda Rothman to be invaluable. I've probably read it a dozen times by now and will reread it whenever I need a reminder.