A Letter to My Friends Coping with IEPs and 504s

Dear friends,

i-see-you-worried-parentsI read every single Facebook post you share about your children.

When the school year begins and my children are worried about whether their friends will be in class with them, I see your worry scroll across the screen in a darker, more anxious tone. Will the new teacher understand your son? Will the school protect your daughter from her nut allergy? Will the one-on-one aide be reliable, communicative, loving?

I know you probably wonder if anyone whose child doesn’t need that level of support has even noticed you. Perhaps that flicker of wonder passes quickly as you walk away from the schoolyard each morning to a list of therapists and specialists to call, or perhaps it digs in more deeply as you watch other parents’ first-day-of-school photos scroll past, uncomplicated. Continue Reading…

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Padding

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She’s ok, I thought, looking at her on the couch with her water bottle and her picked-at bowl of green jello. She’s ok and she will be ok. She’s ok and she will be ok. She’s-ok-and-she-will-be-ok, she-will-be-ok, she-will-be-ok, she-will-be-ok…


Parents like me, whose children have been through medical scares or ongoing health-related issues, often talk about the long-term anxiety that follows. Certainly in the immediate aftermath — even once the drama is months behind us — the expectation that we’ll worry more about our children is palpable. After my daughter Sammi’s last major surgery, the teachers and administrators in her school were incredibly kind and as careful as they could be to accommodate her healing, even in ways that might have been fussier than necessary for her but were utterly crucial for me and my comfort level. On major milestones — when she was allowed to return to recess, when she ate her first sandwich after years of a damaged esophagus, and on the anniversaries of the surgery that healed her, friends have cheered and celebrated with me, remembered and sighed in relief at my side.

But now it has been three-and-a-half years since the biggest legitimate worries subsided. There can be no mistaking her vitality. While there were years when even strangers could look at my daughter and suspect something was not quite right, now the most they might notice is that she’s slightly shorter than her classmates. I have little on which to base my worry these days, except for history and, I must admit, mild post-traumatic stress. Continue Reading…

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At Twelve

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It’s August, and I can’t believe she’s twelve.

I remember the August twelve years ago, after I finished a July of laying on the floor of my office, the door closed, my feet on the back of a chair, trying to turn my stubborn breech baby. I placed earbuds at my pelvic bones and played fiddle music in the direction I wished her head would face. When she turned finally, one night in late July, I felt every organ in my torso shift, roll and right itself again in one nauseatingly relieving motion.

In retrospect, it was a sign: with enough work, everything would eventually be repaired, over and over again. My girl, who always kept me on my back with legs in the air, directing my world from the floor, has now turned twelve, reaching down to offer a hand and pull me up. When I rise, she stands next to me and steps to one side to rest her cheek in the hollow between my shoulder and neck.

She’s grown. Improbably, in defiance, literally right under my nose now. Continue Reading…

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Oh My Goodness

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This the face of one seriously relieved mother.

I’ve watched the heath care legislation being volleyed across Capitol Hill in Washington, DC for the past several months with what one might call significant personal interest. I’ve refreshed APNews, The Guardian, Fox News, CNN, and Twitter more often than any other moment in my life, trying to get a sense for what might happen next, tracing the path of my family’s future as it zipped past us, back and forth. Protections that allowed me to focus on the moment with my daughter as we unravelled her mysterious health challenges over the first nine years of her life have spent the last few months in question, threatened by elected officials who seemed to favor the interests of huge insurance companies over those of children like mine.

Last night, it seemed that compassion tipped the ball over the net, just barely. Continue Reading…

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Lemonade Out of Gluten-Free Lemons

grocery-cartSometimes, I just have to laugh at the way the universe answers the questions I haven’t even asked yet.

It’s half-way through the summer of 2017, and here I am, suddenly aware that I live with one foot in the summer of 2010. I spent that summer in a cloud of specialty flours: tapioca and arrowroot, garbanzo and white rice and coconut and and sorghum. I sprinkled xanthan gum like a gluten-free fairy into all the creative ideas I had for how to make food for my daughter, whose health challenges required that she cut out dairy, eggs, soy, nuts, meat, and gluten. During my deep-dive into specialty cooking for what I called the “joy-free” diet, I dreamed in recipes and grocery store trips. Along the way, I picked up several dozen grey hairs, but I also became an unwilling expert on food challenges.

Though my daughter’s health issues resolved without any need for her to continue with food restrictions, the knowledge I gained never went away. In some ways, it’s not unlike a spare tool in the garage; though we seldom need that particular odd-shaped wrench, the neighbors know we have it, and they can borrow it any time. Even though we may have bought that wrench to put together a hospice bed or to tighten bolts in a subfloor that collapsed beneath our feet — and seeing it brings back every memory of that awful time — we’re glad it’s going to use for someone else who needs it. That wrench — my reluctantly-gained knowledge — shouldn’t go to waste.

Because of this, my friends call me when they need to follow an unusual diet or avoid a common food. And because I want to make lemonade out of those gluten-free lemons, I always help. Always. Continue Reading…

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