Posts Tagged ‘Family’

I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.

Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.

Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.

In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.

A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed.  Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible.  It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.

A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.

And the ground begins to shake yet again.


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With the same jarring sense of realization that I’ve left a load of laundry rotting in the washing machine, this Sunday’s Boston Globe article Learning to Share reminded me of my intention, pledged back in the last millennium, to equally share the parenting load when I became a mother. What’s shared parenting? As the article so aptly puts it, “it’s the difference between being willing to drop off the enrollment form for summer camp and realizing, months ahead of time, that the right camp must be found; between picking up a box of Huggies on request and knowing when supplies are running low.” It may sound tricky (and according to the article, it is) and maybe it isn’t everyone’s dream, but when I read the article, I remembered that it had been mine.

In the idealistic-yet-oblivious flash of social justice insight that only 20-something’s get, it was obvious to me that if I wanted my future daughter to be able to balance a family and a career, I would have to do it first. And with almost eerie prescience, I sensed that simply learning to juggle more wasn’t going to cut it; equal opportunity would start in the home, and that meant shared parenting, not just being a mom who could bring home the bacon and fry it up in a pan.

Looking up from my coffee cup twenty years later, I realize things aren’t quite what I planned. Influenced by aptitude, interest or culture, when my husband and I divide household chores, we party like it’s 1959. Him: breadwinning, carpentry, car repair, pay the bills, IT service, comparison-shop for large household purchases, mow the lawn, kill vermin, assemble the tent, load the bike rack on the car. Me: cook, grocery shop, laundry, clean, de-clutter, mend (well, feel guilty about not mending), volunteer for PTA, buy teacher gifts, do all gardening except mow the lawn, schedule playdates, shop for back-to-school clothes.

Having a child with special needs seems to cement the roles even further. It’s fairly common to have a “case worker/bread winner” division of labor in special needs families, a la Kristina and Adam Braverman in Parenthood. (Love it or hate it, but that show and its companion blog nail my experience as special needs parent in so many ways.) In our family, I’m the one who schedules appointments with our son’s eight doctors and three therapists, chauffeurs to therapies, spearheads IEP meetings, special orders medication and medical supplies, badgers the insurance company, keeps track of the big picture in both kids’ development. Perhaps it’s possible to split this work down the middle, but I honestly can’t see how. In my son’s case there is simply so much information to keep track of and synthesize that my husband and I would spend as much time getting each other up-to-speed as doing the work itself. To make it possible for me to do this, my husband gets to take on the high-stress role of sole breadwinner while keeping up with one heck of a honey-do list. (Is it my fault that he’s the only one who knows how to solder?) We both work incredibly hard, but we are definitely not sharing parenting. I don’t even think this is strictly a gender thing; I’d wager money that same-sex special needs parent couples find themselves in the same bind.

Reading that article, I felt a little disappointed in myself. Somewhere deep inside I’m still that idealistic young woman who hoped to change the system instead of punting the problem forward to the next generation. Caught in a daily grind of unloading the dishwasher and reading neuropsychological evaluations, it became so easy to lose sight of that.

Without creating unnecessary pressure to hold myself to ever increasingly impossible standards, I want to continue to think about this. I would love to hear from other families (especially one who understand the challenges that special needs add to the mix) on how they share parenting. I need some good role models and some inspiration. And maybe simply some hope. Am I the only person thinking about this?

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