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After Hurricane Sandy

Damage from Hurricane Sandy in the Rockaway neighborhood of Queens, New York

Two full weeks have passed since Hurricane Sandy devastated large swaths of my city and state, and still so many New Yorkers are in desperate need: managing somehow to live in cold, dark, and now very dangerous neighborhoods–especially at night.

Unfortunately, as life for the rest of us returns to normal–new subway lines getting restored daily–the less fortunate are fading into the background. No 24-hour news cycle stories about FEMA and the Red Cross failing to keep up with the overwhelming demand, and less personal accounts from the selfless and compassionate volunteers who have rushed in when the government hasn’t. For many of us without affected friends or family, the ongoing suffering is becoming part of our new normal; invisible to us, like the homeless on the subway. Of course, the scale of the crisis hasn’t significantly lessened–only our perception of it.
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Football Snippet

I snuck in a nap this past Sunday afternoon during the Patriots and Jets game. When I woke up, Brooks could hardly contain himself: “Mom, you’re not going to believe it–the game is tied at 23!! Isn’t that unbelievable?! Come watch with us–really, you gotta come watch!”

So I sat down on the couch for a detailed recap of how we got to this score and what I had missed.

“Did I miss anything non-football?”

“Half-time.”

Less than ten toes

I had a dream the other night that I was talking to a teacher on the phone about Brooks when I noticed some of my toes had fallen off. There was nothing bloody about the dismemberment—it was a very clean affair, sort of like a shedding, and a colorful one at that, since I had recently painted each of my toes a different color (my dream toes—not my real ones).

I remember thinking in my dream that if it had only been my left foot with the missing toe, I would have continued the conversation: I never have enough time for these kinds of calls and prefer not to cut them short. But when I looked down at my right foot and saw a gaping space where three of my small toes used to be, I had the piece of mind to gather up all the missing multi-color digits before they rolled away and I headed over to the emergency room.

Although my hospital visit began with a podiatry focus, it quickly segued into a conversation about psycho-educational testing for Brooks. The rest of the dream was foggy, but it was clearly headed in a “toes are overrated” direction.

No need to bring in a dream expert on this one. Apparently, deep down in my self conscious, I’m neglecting myself. Part and parcel of being a parent–especially a special needs one. Perhaps, to heal what’s ailing me, all I need is a date night. Or a spa day (probably minus the pedicure).

The problem is: I’m not really ailing. Did I mention that there was no blood or gore or pain in the dream? There really wasn’t. Because helping my son is paramount: it is as pure and natural—and involuntary—as breathing. When Brooks really needs something, my husband and I provide it, no matter how much we neglect ourselves, each other, or the rest of the non-Brooks world. And here’s the kicker: it makes us happy.

I’d be lying if I said that I no longer want things for myself–of course I do. But if those plans have to wait a little longer, or even if they get permanently shelved, I can accept that. With a smile on my face. Not unlike Shel Silverstein’s Giving Tree who diminishes herself to a stump for the boy she loves and whose story ends: “And the tree was happy.”

Autism and piano lessons

If you saw my post on the arts in schools, it won’t surprise you that my husband and I felt strongly about getting Brooks piano lessons from an early age.

Of course, we had to immediately rule out the neighborhood flyers with tear-off phone numbers—our little boy with big challenges would need a customized setting, and considering his fine motor skills delays, we were pretty uncertain about the wisdom of our decision to make piano a priority.

Where would we even start to look for an appropriate teacher? Although googling “autism piano teacher nyc” does return the standard millions of results, we wanted to take a shot at the least restrictive environment, so we followed up on a mainstream referral from a friend. Turns out there was a woman who taught some home-schooled friends of friends and who coincidentally lived only five minutes away from us. And when the introductory “he has autism” phone call with her went well, we put on our cautiously optimistic hats and took him to his first lesson.

This was in no way a slam dunk, to use a metaphor my Lin-tastic sports-fanatic son would approve of. Two very large greyhound dogs lived in the piano room, and although they were sweet and friendly, this was not exactly ideal for our highly distractable and somewhat dog-phobic son. However, Karen was game to keep going—she didn’t mind that Brooks refused to sit on the piano bench with her, instead hiding shyly on the other end of the grand piano. We watched her struggle to figure out how to talk to him and how to interpret his slight responses.

I have to admit that my hopes were not high: although in theory I liked the mainstream path, in practice I saw that Karen had no direct experience working with autistic kids and I wondered whether this would work out. Worse than that, I was worried that a negative experience would make Brooks lose interest and compromise his love of music. In retrospect, I’m thankful that my husband disagreed with me and felt strongly that we continue. “Trust your instincts” is all well and good, but I’m often reminded that no matter how right they feel at the time, they are, in fact, fallible—or at least mine are.

Four years later, Karen has unfortunately moved out of our neighborhood and transitioned into a new career, but not before turning Brooks into a fairly typical piano student (in the sense that he loves to complain about practicing but when he finally does, he plays well). I’m sure he’s not as far along as his typically-developing peers, but we’ve stopped making those comparisons.

We will miss his lovely relationship with Karen. She was completely accepting of him when he avoided the piano by lying down on the floor and she always answered politely and patiently each of the five or six times during the half-hour lesson when he asked: “Are we finished yet?” She once told my husband and me that she was less concerned about teaching him to play the piano as she was with ensuring that he enjoys the experience of making music.

Last week, I tore a phone number off a neighborhood piano lesson flyer. I haven’t felt ready to make the call just yet, but Karen showed me that we don’t have to restrict our world to autism professionals; that Brooks is able to learn from anyone who is kind and patient and who understands that his strengths define him as much as his challenges.

I’ll end this post by happily bragging about the little impresario—our deal was that he practice ten minutes that night:

The DNA of parents

At our family dinner table, we will sometimes rate our weekdays. Brooks is a natural optimist (and lover of clown noses) and will usually give himself a ten, barring any odd disturbing event that would bump it down to a seven.

But my husband and I never go above an eight. Not because we whine about our work days–which we do–but because any ten for us would have to be a day spent with Brooks.

We are rather smitten with him.

Like blogger MOM – NOS, who loves her newly-turned 13-year-old son so much it makes her head spin, and Beth Kephart, who loves her college graduate son so much that “there’s no math that will contain it,” and Heather Armstrong of dooce.com, who has chronicled her daughters’ lives and wrote this about her eldest at five months old:

I cannot keep your face out of my mouth, it is just so scrumptious and plump and chewy and round. You have a lot more hair on your head, so instead of putting your whole head in my mouth I bite off your ears and nose and gnaw on your chin. And then I go back for more cheeks. Sometimes I just can’t stop and I end up swallowing you whole and I walk around with your feet hanging out of my mouth. When your father comes home from work he asks, “Where’s the baby?” And I have to confess, “I ate her.”

Autism or no autism, tiny or grown, this type of behavior seems to go on everywhere.

Someone should figure out how to bottle it.

Autism and weddings


My niece, Lindsay, married her longtime boyfriend, Colin, this summer on a warm evening in a storybook outdoor wedding.

This was easily the highlight of our annual Winnipeg pilgrimage, and Brooks celebrated by tearing up the dance floor while sporting his first-ever tie.

Although I too enjoyed the live band, my memories are quieter: the vintage table setting display where guests’ names were painted in white script onto weathered window panes by the father of the bride; my dad’s “wedding tie” hanging over his photograph, the one he wore to each of me and my three sister’s weddings; and then there were the speeches, each one as eloquent and heartfelt as the one that preceded it.

The best man, Colin’s brother, got choked up when he spoke about how he knew he was going to recover from an unexpected surgical procedure only when, still groggy from the anesthetic, he saw Colin standing at his bedside in the army reserve uniform he had rushed home in: “I knew I was safe. Big brother.” Lindsay’s dad thanked my sister–somehow they love each other with no less passion than they had in high school when a late night bonfire conversation sparked the start of their relationship. My sister admitted that she had no advice for the new couple because they’re  already doing all the right things: case in point, the bridesmaids and groomsmen were all closely-held family and friends that the newlyweds value and nurture as they do one another. And Lindsay herself, choking back a sob, thanked her parents for “everything you did for me that led me to him.”

My talented filmmaker nephew, Kai, then moved everyone from tears to laughter with a video about his new brother-in-law that combined baby picture cut-outs, interrogations, and time travel.

Brooks sat quietly through it all, and given his auditory processing challenges, I don’t know how much of it he got, a least on a cognitive level. But I do know he gets this: that those who had gathered that night,  dressed to the nines under candle lanterns hanging from tree branches, are his family.

They all know about my son’s autism, and I don’t ever regret having made the decision to be open about it early on. They love and accept him exactly as he is.

During the cocktail hour, cousin Miriam whisked him away to a nearby gift shop and returned him smiling ear to ear with a new paddle ball set. Then Uncle Kevin passed on hors d’oeuvres to help Brooks break in the new game. And after dinner, when he wasn’t dancing (the boy loves to dance!), he was hanging out with his cousins and his aunts and, of course, my mom (his “baba”)–they are insanely crazy about each other. My mom has that same oversized relationship with each of her seven grandchildren, and it is quite beautiful to watch.

Unless there is a winning lottery ticket in our future, Brooks won’t ever have a trust fund. But he’ll always have this remarkable family. And do I appreciate how valuable that is? I do.

My very own blog

CapturingAutism.com is my new blog home, and I’m just settling in.

I’m grateful to Insideschools.org for giving my autism stories a platform for the past four years, and although I plan to continue writing about our NYC school challenges, my son’s diagnosis has affected each and every aspect of our lives and I don’t know how not to write it all down.

The absence of an editor in this new endeavor makes me heady with independence but also fully aware that no one to answer means no one to be saved by. So consider yourself warned.

I’m not certain how often I’ll find time to write—I’ll try for shorter posts more often.

If you’re game, please enter your email address at the top right to subscribe—that’s my preferred way to keep up with blogs. Or if you’d rather you can also find me on Twitter, Tumblr, Facebook, and Pinterest.

I’d be honored to have you along for the ride.

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