A mother of an 18 month old in my class asked me today if she could bring her older son along for the last three weeks of our session.
She said, "If it's not okay I understand. He's five." Here she looked at me closely, something flickered across in her gaze, searching my own. "He's autistic." She sucked in her breath and waited for my response.
"I would love to try that," I told her. I meant it; she knew. She wanted to say more. I smiled, hoping that she would take that to go on.
"It's just...he's just....well he's not really five. He's always had some delays...but...well...music has always been good for him...I just want...I hope...." Her words lost their shape, floated like thin clouds into the ether.
I wanted to hug her.
"My son is in an ABA program," I said.
"Does he have autism?" was her fair enough and predictable answer.
I shrugged. "I don't think so. The ABA is for speech therapy. I think he has verbal apraxia, but we have yet to get that diagnosis. Or assessment for that matter!" I laughed as I told her how comical but sad it was to listen to Bubbles' own indecipherable language tumble around his mouth. I told her that I certainly have concerns about it, as Bubbles' vocabulary seems to be increasing, but his articulation is not improving at an expected rate.
She commented that I seemed to be handling it well, and I responded that we had been through early intervention before with Elijah, of course we were hoping for a different 'outcome' this time... She grinned at me and asked if we could go out for coffee sometime soon to talk about ABA (her son is just starting a program) and everything else in the world. Aha! I have sucked another friend into my world!
Her son received the diagnosis just a few months ago. That part shocked me. But it also reminded me of how fragile our concepts of our children really are.
She actually knew long before the diagnosis. Of course she did. He is five.
There is so much wrapped up in a diagnosis. Maybe relief, maybe shock, mourning, fear.
And guilt. Let us not forget guilt.
I have a secret.
I usually think I am the only one with this secret, but the sad truth is that most mothers in my position have their own secrets.
We, above all medical professionals and developmental specialists, know what is wrong with our children. We are sure we know what made them different.
Because, you see, we grew these children. So of course we must be the source of their pain, their differences, their challenges.
I am sure that my childrens' picky eating habits are one of my lower gene pool swimmers, and I feel horrible about that. It also makes my life as their mother who needs to feed them very challenging. Dh knows that our kids are freakishly stubborn because of his own gene pool. We all know that we will pass some of our traits along to our children; others will be unexpected.
But growing that baby? Is delicate work.
Every time a child comes out looking like what you may consider 'perfect' (you who all counted toes and fingers), I consider it a miracle. Those are the kinds of miracles that I even consider at all. Every baby who is born with the ability to suck? Another miracle. Babies who grow and learn to sit up, crawl, and walk? Wow. Lucky. Seriously gifted.
Children who learn to talk, converse, hug, function? Don't get me started on the fireworks of miracles happening there.
When pregnant, most us of spent some time dreaming about that little nugget with limbs and her future. There were, of course so many variables, it was hard to actually picture her. And in the name of freedom of personality, who would dare to try? But really? Would there be sports in my future? Because I hate the sports. Would she want to go to college or move to Costa Rica? Would she want to get married someday? To a guy? Would she do my bidding and eat the homemade pureed organic spinach brown rice babyfood (no), wear her hair in long braids and favor smearing homemade jam on her homemade pinafores as I homeschooled her? (no, no, and no)
And he? Would he be taller than his tiny sister? Would he want to take ballet? Would he want to live with us in his twenties? Would he sleep through the night?
And of course....did you get the prenatal testing done? Phew, because now you can stop worrying about those 3 things that they can screen for.
Because you of course are spending all your free time wondering if he (or she) will have a neurological disorder, developmental delays, autism, apraxia, PDD/NOS, etc.
No, me neither. Until it happened once. 'It' being merely something different. Something mysterious, yet unexpected and glaringly different.
And then we had this little window, this snippet of time to hold on to this mysterious, glaringly different, and glaringly precious bodhisattva before he moved on. *poof*
But on the days when I am feeling less gifted and more cheated, he was not a bodhisattva. He was just not given everything exactly right. From me: right time, right place. When I was growing him, of course. If something went wrong there and then, I do believe that all of the rational thinkers and doctors in the world could never convince me that I was not at fault.
There were all those drugs pumped into me for six weeks. I consented; I was told it was the best thing for my baby...to try to keep him from coming too early (he never did). There were the weeks of hyper-emesis and weight loss, the weeks without vitamins or solid food of any kind.
My dirty little secret: My child was different because I grew him wrong.
We're in the park of differently-abled people again, but on a different ride. This time around we are dealing with what has been classified as 'a severe expressive language delay'. His supervisor for speech therapy and ABA (all of whose services we will lose in 3 months) is extremely confident (her words) that he does not and will not meet the criteria for a spectrum diagnosis, though she shares my concern about the verbal apraxia and is arranging for an assessment. Not that a diagnosis of apraxia would get him any more services after he turns three, at which point we are basically going to get screwed by the school district: fact. Stay tuned.
So here I am again hiding my little secrets. When I was pregnant with Bubbles, I didn't eat enough vegetables, I forgot to take my prenatals on purpose when I was nauseous in the beginning, and in the last trimester, I drank a full glass of wine on more than one occasion!
I screwed him up; I totally never gave him a chance to talk pretty.
Guilt has gripped me ever tighter each year of motherhood.