Before and after

Brooks came to a comforting realization a few weeks ago when what started out as another night of routine dinner conversation became a philosophical discussion about birth and death: “I’m not going to die for the rest of my life.”

This was before Newtown, when this blog post might have been about how much I love watching him get a foothold on these worldly concepts that he’s just now beginning to grasp, and how that refreshingly makes me reassess my own grasp on all of it.

But now, after Newtown, that approach has lost its appeal. No one, myself included, can stomach the part where I tell him he won’t die until he’s very old, even though it is as statistically true as ever.

Because there is a hard, cold reality that cannot be wished away for the families of those 20 first-graders who tragically bucked those statistics and their 6 heroic protectors, not even in this holiday season of miracles.

Now that we know at least one of the victims had autism, I hope it is less important whether the killer did. I hope that what becomes most important is fighting for gun control laws and improving mental health care services.

I am a firm believer in tributes: whether it’s in the form of Ann Curry’s 26 Acts of Kindness or a retweet of my former colleague’s simple yet elegant 140 characters:

 

Mercifully, the promise of a brand new year is just around the corner.

 

 

 

Making peace with autism stims

My husband and I were introduced to stims long before we knew what they were. Turns out that Brooks had not, in fact, been teething for the first few years of his life, but rather eating his hands (or anything else he could get into his mouth and chew on) in order to calm and regulate himself, the same way you or I might tap a pencil or bite our nails. Except that Brooks went at it like he was on speed.

Back in those early days, we committed ourselves whole-heartedly to gently redirecting his stims—this particular oral one and the many others—into more socially acceptable behaviors. So when he got excited and flapped his arms, we encouraged him to clap his hands instead. Of course, first we had to teach him how to clap his hands. But as anyone with an autistic toddler knows, progress doesn’t come without Herculean amounts of time, effort, and patience.

to_stim_or_not_to_stim_ipad_caseAlthough I have the capacity to be very patient, as a rule, I become much less so after 6pm. I remember one evening when we were visiting friends that I told Brooks “No hands in your mouth” and I physically pulled his hand down. I fully understood that this did not meet the criteria for gentle redirection, but like I said: it was late in the day. My friend, Sue, who is one of the finest parents I know, asked me why I stopped him—what was so bad about him putting his fingers in his mouth? I was honest: nothing. Except that when he does it, all I can see is him, as a grown man, institutionalized because he gnaws on his hands.

As the therapists promised, many of his stims have improved over the years. To be clear, they haven’t disappeared—they tend to hibernate for a while and then reappear, sometimes morphing into new forms. These days, Brooks still puts his hands in his mouth and chews on the neck of his shirt more often than we wish; he runs back and forth (and back and forth and back and forth) when he’s watching a football game or anything else on TV; and although he doesn’t flap his hands exactly, he does this “body shake” when he gets excited that is socially awkward.

I like to think that, over the years, my husband and I have improved our responses to his stims: that our son’s self-esteem can survive our gentle reminders (although, honestly: I’m not sure how happy I would be with someone correcting me all the time, no matter how gentle). We’re certainly more laid-back about it, but no less committed to giving him every possible social advantage without unduly torturing him—we toe the line as best we can.

But I can’t help wondering if we’re getting it all wrong. Last week, the three of us were playing cards and Brooks made an excellent strategy move which, of course, got him up from the table running back and forth (and back and forth and back and forth).

So I playfully said: “Hey, can you please stop galloping around like a horse and play the next hand?” Brooks started laughing hysterically and so did we. Maybe we take a “social advantages, shmocial advantges” approach: this is how he experiences excitement, and as my friend Sue once wisely told me, there’s nothing really wrong with it.

 

 

 

Learning to score touchdowns

Last Thursday, we started a new family tradition: our first annual Thanksgiving football game. We’re big fans of ”if at first you don’t succeed; try, try again,” and here it is in perfect form:

 

Wishing you many touchdowns this holiday season.

 

 

 

To my son’s future significant other

If you’re reading this, I am so very pleased to meet you: it means that the future has been kind enough to let you and my son find each other.

I don’t know if you’re a man or a woman, or if you have autism or not; nor do I care. I do know that you’re gentle and caring and compassionate because that is what Brooks responds to. It’s what he’s always responded to since he was a baby, and my husband and I hope he never outgrows it.

But there are other characteristics that we are eager for him to outgrow, and you should know that regardless of how successful we are in our endeavors, we have been diligently working on them.

I thought of you the other night when we were having dinner and Brooks started eating rice with his hands. We can’t ignore that these kinds of habits will only magnify the disadvantages he’ll face in the social quagmire of high school, and even once he somehow makes it through all that, how will anyone–especially someone as nice as you–ever sit down to a meal with him? It’s not like we’ve never taught him that he can’t use his hands to eat rice, but it’s complicated for him: he wants to use his hands because of his fine motor challenges and he has trouble remembering the rules: he can use his hands to eat fried chicken–why not rice? So now he has to remember the inconsistent rules and manipulate the fork (plus he happens to have the appetite of a Sumo wrestler).

I wish I could promise you that his improvements over the years will be significant, but the reality is that they may be slight. I’m guessing you already know that he cannot be asked to make a bed unless you want it to look like a Salvador Dali painting; that he simply doesn’t process where the blanket ends and the pillow begins. And that his other home care skills like laundry and cooking and cleaning will never be second nature for him. Although he’ll continue to master certain aspects, I’m afraid that others may remain beyond his capabilities.

And that’s not the half of it. I wish I could sugar-coat his intellectual delays, but I have to be honest with you: his brain works differently. It is not defective, as some misguided parties claim, but rather unique in its processes. He experiences the world differently and he can’t easily learn what we deem valuable–only what he does: like memorizing the roster of almost every team in the NBA. And the NFL. And the MLB. At nine years old.

I’m guessing that you know all this, and that you don’t care; that you understand what really matters whether he’s nine or twenty-nine is that he’s doing the best he can, and no matter how much we want him to spare him the pain of feeling different, there comes a point where we need to graciously accept his limitations.

And the surprising truth about those limitations is that when you spend time with him, they fade away into the background. No one knows this better than you and I. He takes our breath away: his magnetic good looks, easy smile, and winning charm; the kind and gentle way he asks how our day went; his quirky sense of humor and infectious laugh; his moves on the dance floor; and finally, his unparalleled enthusiasm that hovers somewhere between driving us crazy and making us insanely happy.

Brooks is supposed to find someone to share his life with, but he was also supposed to thrive in an integrated school environment, and he was also supposed to lose his diagnosis. In the shadow of these unrealized optimistic expectations and in the interest of keeping a firm grasp on reality, I am forced to wonder whether you exist.

But then I look at Brooks–how absolutely perfect he is exactly as he is–and I realize how unfair it would be for me to play it safe and saddle him with low expectations. And when he looks back at me–in those purest of moments–my fears wash away and all I can see is the magic of his future. And your part in it.

It is my fiercest hope that someday I get to welcome you to the family.
 
 
 

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.

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