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.
Tuesday, July 31, 2012
Thursday, July 12, 2012
To poo and beyond!
Shit!
After nine months of carrying them the first thing that is paid attention to is their pee and poo. Is it yellow, orange, crystalline? Is the poo brown, green, solid, liquid or pebble like. These are things no one tells you in the Lamaze class or the parenting class you take prior to birth. You remember, the one where you're taught to bath a Tiny Tears knock off and change him/her. In fact those classes go out of their way to avoid the shit factor.
You float through nine months blissfully (for those allowed that grace) and when it comes to it and you bear down you may actually shit yourself. I did as much with my 2nd baby, no epidural and no IV. I wandered in to the ER fairly sure I was in labour. In fact I was, and 8 cm agreed with me. It was literally a pop, catch and release situation. At some point mid push I shit myself. A nurse swooped in, no one knew, I mean I was barely aware. No one said, it was of course witnessed but never mentioned. Suited me fine.
If I had known it was a bit prophetic. This was my second baby, full term, healthy as an ox, great eater. We dubbed him the Stepford baby for about 11 months. Then I began to worry, ask questions, he was placid, almost vacant; he sat in his chair, watched us all, taking us all in. By age 2 1/2 he officially had 7 words. I screamed up and down the pediatricians hallways until they either heard or sent me away. At the time I didn't care, we weren't stagnant anymore as I was sent away to specialists. His initial diagnosis, chronic ear infections leading to slow speech development. I read that now and cry laughing. How many parents of placid Autistic's get that as the initial diagnosis? Autism came later.
Several years of speech and occupational therapy, great special education placements has meant that placid, non verbal little boy is a talkative, goofy, funny and brilliant child. To look at him he looks the same as all other NT (Neurotypical) peers. His public self still struggles with speech and the give and take of conversation. He is far more comfortable in his own world, space, science, math, bakugan and Skylanders.
You would never believe this brilliant nine year old really is not potty trained.
And there you have it people, they come out and all the people around you worry about their poo, then they're Nine and you are the only one worrying about their shit. Never ends really.
After nine months of carrying them the first thing that is paid attention to is their pee and poo. Is it yellow, orange, crystalline? Is the poo brown, green, solid, liquid or pebble like. These are things no one tells you in the Lamaze class or the parenting class you take prior to birth. You remember, the one where you're taught to bath a Tiny Tears knock off and change him/her. In fact those classes go out of their way to avoid the shit factor.
You float through nine months blissfully (for those allowed that grace) and when it comes to it and you bear down you may actually shit yourself. I did as much with my 2nd baby, no epidural and no IV. I wandered in to the ER fairly sure I was in labour. In fact I was, and 8 cm agreed with me. It was literally a pop, catch and release situation. At some point mid push I shit myself. A nurse swooped in, no one knew, I mean I was barely aware. No one said, it was of course witnessed but never mentioned. Suited me fine.
If I had known it was a bit prophetic. This was my second baby, full term, healthy as an ox, great eater. We dubbed him the Stepford baby for about 11 months. Then I began to worry, ask questions, he was placid, almost vacant; he sat in his chair, watched us all, taking us all in. By age 2 1/2 he officially had 7 words. I screamed up and down the pediatricians hallways until they either heard or sent me away. At the time I didn't care, we weren't stagnant anymore as I was sent away to specialists. His initial diagnosis, chronic ear infections leading to slow speech development. I read that now and cry laughing. How many parents of placid Autistic's get that as the initial diagnosis? Autism came later.
Several years of speech and occupational therapy, great special education placements has meant that placid, non verbal little boy is a talkative, goofy, funny and brilliant child. To look at him he looks the same as all other NT (Neurotypical) peers. His public self still struggles with speech and the give and take of conversation. He is far more comfortable in his own world, space, science, math, bakugan and Skylanders.
You would never believe this brilliant nine year old really is not potty trained.
And there you have it people, they come out and all the people around you worry about their poo, then they're Nine and you are the only one worrying about their shit. Never ends really.
Thursday, July 5, 2012
Too able to be disabled
A dear friend pointed out to me I hadn't blogged in a while. This is true. There's no real deep reason why, honestly I've been busy. School ended about 6 weeks ago and it's incumbent on me to tell you my children are too able to be allowed extended school year yet too disabled to attend day camp. The boys, now 12 and 9 did attend a special needs day camp for a week. They have gone there there there last few years. Hannah is in a different realm, she is too able to be disabled for sure. However, she also hugs the edge of Neurotypical enough so she craves friendship and interaction openly. I took a risk and enrolled her the same week in the day camp for typical children her age. I mean, it was a week. What on earth could happen?
Never ask such questions.
Cue one broken wrist through two bones and a cast from her thumb to her armpit. The boys both declared they hate their camp and never want to return. So, yep, I'm a tad overwhelmed. In the interim, all three are doing their best to disembowel each other, I have applied to nursing school and roll the fuck on school ....for us....all!!!
Never ask such questions.
Cue one broken wrist through two bones and a cast from her thumb to her armpit. The boys both declared they hate their camp and never want to return. So, yep, I'm a tad overwhelmed. In the interim, all three are doing their best to disembowel each other, I have applied to nursing school and roll the fuck on school ....for us....all!!!
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