There is a natural order to things, even if the thing itself is a bit off center. It's been around since I first became unofficially and then officially aware of my three puzzle piece's special needs. If you are a parent I know you will relate in some fashion to what I mean, regardless of your child's needs, typical or diverse. It's the hierarchy we are pushed into, the realm of others that technically should be on the same playing field. It starts as soon as we tell family and friends excitedly we are expecting, then ripples out into the community as bellies show and people question. You're in a select group now, a joyous clique. Of course along with that comes people's opinions, advice and stories. It's all met with appreciation, real and plastic and then there you are nuzzling with this blotchy pink warbling creature, one eye wide like Popeye; "he's a cryer..." we all laugh.
18 months later, he's still a crier, also not speaking much, if at all. He holds his belly a lot, writhes on the floor, spins, steps back and forth like going over the same four steps in a dance. Constant ear infections, adenoids removed, ENT's, multiple doctor's, specialists. My clique shrinks a bit, ok it shrinks a lot.
Play dates are rare, as months and years move on birthday invites diminish to nothing. Neighbor's whisper things you know you never want to hear. Once you receive a definitive diagnoses, no matter what it may be, you feel validated, angry, devastated, triumphant, weak, strong all at once. Now you know why that clique, that hierarchy of parenting had no place for you. Surely there must be other's out there....just....like....us.
This is the kicker, yes, there is a place, a clique, in fact many many cliques. And within' those there are sub cliques and off shoots and support groups and support groups that become support to survive the initial support group. There are play dates, jealousies aspersions and projections There are those who would shower you with advice and knowledge until you want to scream for a flotation device, then there are those that look you up and down like you really should take a bath, and why on Earth is your child shoe less and only in an over sized onesie. Yet most, so overwhelmed in their own closeted world have become so insulated out of fear, judgement and society; remember the one we used to know until the birthday invites vanished. Our children are still placed on pedestals to share symptoms, milestones, progressions. However, they are also compared in terms of regressions, symptoms and diagnostics. Sometimes it appears that if another's child is faring worse on the disability scale, you've been one upped. It took me years to realize that these parents do actually exist and I wasn't being paranoid. Took me years more to understand they are trapped, back in the stage of diagnoses, when they have no parental hierarchy to feel accepted. Literally trapped in a moment in time, terrified.
In my experience, it is near impossible to find someone who can share, grieve, celebrate, cry and laugh together, certainly in a local support structure. Even among each other we cleave to our leaden roofs, our thick emotional walls. The cliques are smaller yet still flourish in their own way, still most of us are frozen out. And again, as individuals we feel we are alone.
I'll be honest, I have cut out my fair share of those who I felt didn't "understand," or were too "involved" with their children's diagnoses. Nothing puts you on your egotistical horse more than dealing with three Aspie meltdowns and seeing someone tweet or post a blog about the tough time they had at the grocery store with one. I have also been told by several people they want nothing to do with me as they feel I am too much. And for a long time I was, I was too much. Don't get me wrong, I'm still a fiercefully opinionated, arrogant advocate and I am prone to pissing off one or two here and there, still experience tends to show one's humility, especially when one is ready to let it go, let it all go. I sense my letting go may take a bit more patience and time though. Hope that's ok.
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