The Upside of a Storm-Tossed Inside

I have kept journals on my kids since they were born, though in recent years, my entries have become more and more sporadic.  I often think to write in the journals, but get distracted--typically by the siren call of some electronic device.

But in the aftermath of Hurricane Sandy, that excuse was no longer at hand.  In fact, the siren call was to read, play card or board games, and taking advantage of what daylight there was, to write in my children's journals.  The last entries in each, I found, went all the way back to May of 2012.  I didn't even attempt to capture all that's transpired in the intervening months, nor could I.  The journals are memory keepers precisely because my mind doesn't hold memories at all well.

It was surprisingly soothing to sit and write.  Old-fashioned.  With a pen.  On paper.  It seems a rare thing these days to be alone with one's thoughts, to have enough quiet so you can hear the stream of ideas and see the stream of images in your own mind.  It was a treat to spend time reflecting on these past months, to think of how my kids fared, at school, at camp, at work.  Some of the reflections expose the ongoing challenges of parenting, but in reading earlier entries, I am reminded of how if you leave things alone for a time, sometimes, they (re)solve themselves.  That is probably more often the case in the fraught relations between parents and children than we realize.

There is nothing profound in these musings other than, perhaps, the implicit gratitude in having a home still to write in, whether by daylight, candlelight, or flashlight.  I am haunted by my friend Rebecca's Facebook posting about a Staten Island mother whose children slipped out of her arms during the storm.  Holding my children close, in actuality and via the reflections in my journal entries, is a privilege I hope I never take for granted.  I hope none of us ever does.

May He Who Is Without Sin...

So here we are in the midst of these deeply serious Days of Awe, a period of introspection, of seeking forgiveness, of turning toward our better selves, of letting go of our sins so we can start a new year on a better footing, with a clean slate, as it were.

But what if we have no sins?  What if there is nothing we have done for which we need to seek forgiveness, from either man or God?  What if we already embody the highest ideals of human behavior, the greatest aspirations of decency, kindness and the like?  If we're already at the top of the mountain, where do we then go?

I thought these thoughts as I worked my way through various prayers while sitting next to my son, Noah.  Here is a child, albeit in a young man's body, who has no idea what a sin is.  I cannot even explain it to him, as abstractions are beyond his comprehension.  When we stood together to cast our sins into flowing water Monday evening, I asked Noah what he did wrong that he was sorry for.  He looked at me like I was asking him the oddest question on earth.  Just like when I give him pennies to toss in a fountain and ask him to make a wish, Noah hasn't a clue what I mean.

What of someone who is without sin?  In my head somewhere I hear this phrase--biblical?--about he who is without sin casting the first stone, or something like that.  Funny thing is, Noah truly is without sin, but would never think to cast a stone at or judge another human being.  The first would hurt someone (and he knows that's a bad thing to do), and the second is just too abstract.

So what of all these prayers, these apologies, these requests for forgiveness, for a new lease on life, for a chance to do better?  They don't apply to my son, which means they don't apply to many other sinless folks wandering our earth.  What prayers might make sense for them?  What tshuvah--what turning--should they attempt?  I am not wise enough to know, but I have a suggestion or two.  Perhaps prayers they might utter could go something like this:  "God, if you are real, keep me as I am, with all the gentleness with which I have been endowed.  Don't let me become cynical, bitter, competitive or judgmental, for those are things that make others ugly, from the inside out.  If you could though, could you help me understand a bit more of what people say to me and how they behave?  I don't need to be like everyone else, but if I could turn toward them a little, with a little more comprehension, maybe I would be a little less lost, a little less dependent, and a little more on a path where more people could recognize me as their companion."

Since Noah doesn't know what a prayer is, and why we might utter one, I will keep that one for him, and will hope that if there is a God, that God is listening.  Above all, I hope the prayers of the sinless can be heard.  And answered.

Just Another Manic Sunday

I forget how much I love the country until I am there again.  And then I am deeply in love.  This past weekend, I got to share that love with my kids, all of whom joined us for the weekend.  OK, so Sam slept quite a bit, Ariel watched way too much TV between fishing outings, and Noah, well, he just needed to rest.  But he also had a breakdown of sorts.  Not even sure what triggered it.  It was one of those manic episodes, where he cried and was inconsolable for a long time, and later the same day had bouts of manic laughter and silliness, a la The Joker, sort of.

Len played tennis with Sam, which gave Len great joy.  I hope Sam experienced some of the same.  Watching Ariel fish was a highlight for me.  And Noah's hole-in-one on the first hole of mini golf was a cause of much merriment and bemusement.  Len and I went on an early morning--and initially VERY cold and foggy rail trail ride, but what a great way to start the day.  Wish I had a trail nearer by, as it's just great to cruise along past farms and streams and lakes, and to breathe in sweet, untainted air.

Coming home was a drawn out process, a kind of leisurely wending our way back.  We stopped for lunch at an outdoor cafe, and it was surprisingly hot in the sun.  We passed a local bike shop and Len and I stopped in, had odometers affixed to our bikes, and treated ourselves to new helmets.

There's always that "holy cow how much dirty laundry do we have??" reaction when we come home, but it was compounded this time by the fact that we had Noah's camp duffel with us.  But that's part of summer's routine and tradition as well, it seems.

It's hard to know, once your kids reach a certain age, how long they'll deign to spend even part of a summer with you.  So I try to remember to treasure the moments, especially the silly ones, like dinosaur feet, kids quiz show, competitive mini golf, bladder busters, and just being around one another, however haphazardly.

As the school year approaches again, I try not to anticipate the tightening in my stomach, the worries about already being unprepared, disorganized, and somehow behind.  I just want to find a way to hold onto the slower pace, lazy days, and happily diminished expectations of summer.

Ultimate Zen Mama

Calm, cool and collected are probably not the adjectives I would typically attach to myself.  Passionate, opinionated, yup, got a lock on those.  But the calm thing, not so much.  Not until lately, that is.  Cannot tell if this is cumulative fatigue kicking in, such that I'm just too darn tired to kick up much of a fuss about anything, the advent of some kind of long-sought wisdom, maturation, or the general byproduct of aging, but I'm finding that things that might have--would have?--rattled me a few years ago or even less, kind of blow past.

Examples:  found out by accident that my daughter's sleep away camp was without power for several days, in the middle of what is probably our hottest summer on record.  It's a low-tech and lovely camp, so this meant candle light, gathering around the generator in the dining hall, trucking in bottled water for tooth brushing and washing, and hauling water from the lake so the toilets could be flushed.  I heard this litany from one of the administrators and I thought, "Inconvenient, but kinda cool.  Throwback times.  Humbling to be reminded of how utterly dependent we are on the things on which we are utterly dependent.  But we can adapt fine."  Not that I would necessarily have done anything a year or two ago if I'd heard the same story, but I was totally calm, unworried, unharried.  Just assumed my daughter would manage.  And that the power would eventually come back on.  As it did.

More to the point, hired a new housekeeper when I went back to work full-time at the end of June.  Had my doubts because she seemed too competent--and offered to cook.  Showed up for the interview with her Ipad and printed reference letters.  But ok, she actually seemed to want this part-time, largely housekeeping job.  Then her uncle died and she needed a day off for the funeral.  Then she wanted to visit her daughter in Virginia.  Then her mother supposedly died.  After which, she just went AWOL.  At a different age/stage of life I would have been frazzled and frantic, worried about how I was going to get to work and have coverage at home.  But now my kids are older (and presently in camp), and I'm just glad she went AWOL now, so I could replace her before school starts.  And it took me a whole day to do so.  Now I just want my house key back.  Or I'll just deal with the aggravation of changing the lock.

Then there were the pleading "I want to come home" letters from my daughter with the cast-encased broken wrist.  It must truly be frustrating to be in summer camp (second half) with your forearm in a cast, but it ain't the end of the world.  I got tough during one teary phone call about a week ago.  Told her we could not--would not--pick her up and bring her home.  It's not the end of the world and she'll just have to deal.  Didn't feel the guilt I normally would have.  Felt instead that she needed a reality check.  I'm no jumping bean mama who runs to the rescue every time my kids kvetch.  And lo and behold, when I spoke to her today in the infirmary, where she's nursing a low-grade fever and a wet cough, she sounded good, all things considered.  Color War had broken noisily outside, and she found out that she was on the White Sesame Street Team (vs. Blue Muppets Team).  Good to hear the enthusiasm in her voice.  And one of the counselors had brought her a Hunger Games book to read.

Not sure if it's age of life, stage of life, or what.  But this Zen Mama thing is pretty great.  I feel it at work too, where things that might have rattled my cage some time back just blow by.  I can honestly say that however things go at work, they go, and I'm ok with that.  Will do my work with pride and integrity, as I always do.  If it's good, great.  If not, hey, no job defines me, and it ain't the end of the world...

Moving at Warp Speed

I continue to be surprised at myself, at how I seem to skip over things that are really significant. I am trying to rectify that here, albeit a bit belatedly. I went back to work full-time, five weeks ago. I am so tired from it that I feel literally drained. Stick a pin in me and nothing will come out. Whatever was propping me up leaked away. I'm not doing manual labor, toiling in a coal mine, but I don't think I could be more exhausted if I were. My day begins shortly after 6 a.m. I arrive at work before 8 a.m. and I have typically been leaving the office around 6p.m., without leaving the building during the day. There have been so many meetings, and the pace is so quick. So many people to get to know, so many programs with which to familiarize myself, so many acronyms to master. It all just feels overwhelming. And I just feel too old to start over like this. And yet... I feel very energized by the work, by the expectations. There is too much to do, too much to keep track of. But I want to do it. I want to do well. I want the people who hired me to be glad they did. And that is a good feeling, at my age and stage of life. I am so pleased that I started this job while two of my kids were in camp. Though I feel the loss of summer leisure a bit, juggling this and the start of a new school year at the same time simply would have been untenable. At least with summer under my belt, I will arrive at fall a bit out of the starting gate at work, and hopefully less stressed on the home and school fronts. In the end, I am grateful to have this chance. But I also understand why government seems to attract so many youngish types. They not only have the ambition, they have the energy. This pace is not made for folks of a certain age, comme moi...

A Call to Clap For

I had thoughts of heading out for ice cream this evening, and nearly had a foot out the door when the phone rang. It was a counselor from camp, calling to have us speak with Noah. It's been that kind of crazy week--what with my return to a very hectic, full-time job--that left my brain so drained that I completely forgot about the call. Noah sounded sooooo good. First thing he told me was that he went underwater. I asked him where and he told me "in the pool." I asked him how it felt and he said "cold." Noah told me that he went to the corral and saw a chicken that had laid some eggs. He brushed a horse in the corral and the horse's name is Buddy. Noah saw a waterfall and when I asked him where, he hold me "in the woodlands." When I asked him where he showers, he told me "in the bathhouse." When I asked how it was sleeping in a tent, he said "wonderful." The only thing that could equal this is having as good a call with Ariel when we speak to her in camp. But that's a ways off, so I'll have to anticipate optimistically. The week at work has been physically and psychically draining, and I don't know how or whether it will work out in time, but this call with Noah trumps all anxieties at work, drowns all fatigue, and brings me back to what always gets my heart singing and my spirit soaring: good news from, with, and/or about my kids. It just isn't more complicated than that for me. And I hope it never is.

Who Woulda Thunk It?

Hard to believe that the highlight of anyone's day could be peeing (repeatedly) into a cup under the watchful gaze of a minder at a drug testing site in a dismal office in downtown Brooklyn. But so it was for me, on a beautiful Thursday morning. I arrived at room 301 and was alone with the bare white-ish walls and the bland folding chairs until a couple came in. She sported a version of a do-rag and multiple rolls of stomach fat. He had bad teeth and an impatient attitude, which he took out on the squirming toddler in the stroller they rolled in with. He wandered over to the sign-in window and started reading the graffiti on the wall, which I hadn't noticed when I came in. He read it out loud. Maybe f this and that is a kind of lullaby in his household; I hope not. We were joined by four or five other young women, each with a stroller with either a baby or toddler in it. All of the adults were there to be drug tested. There were some solo guys in an outside waiting area, including a real stud with a tightly wound black stocking on his hand, a rhinestone encrusted pistol belt buckle, and a smattering of tattoos. Though I can pee freely-and often-every other day, this was the one time it took me three tries to fill the vial. Skinny young girl who accompanied me to and into the bathroom was very nice. I joked, "This can't be much fun for you." "No it's not," came the polite reply. I peed once, then drank some water to try to generate some more. Not quite there. So around the corner I went to an Arab-owned convenience store for some coffee. Guy pouring was nice; customized everyone's order with extra sugar or milk. Coffee was lousy, bitter, but added milk cut the bad taste a bit, and thankfully the coffee did the trick. Headed back to Manhattan to meet my friend Mickey for coffee (though I chose OJ). Always a joy to see him. Then I headed home, opting for the subway/bus method. Wouldn't you know, I just missed the bus after I got to Flushing and waited twenty minutes with--you guessed it--my now bursting bladder, for the next one. Trip home was fine, but evening just brought with it a complete collapse. Aggravating, routine arguments with Ariel about dinner: what's available for her to eat and her objections to each choice. So Len and I decided to walk into town with Noah and try our luck at al fresco dining during our town's restaurant night out. Not sure what happened, but something snapped in Noah. We couldn't convince him that any of the options was worth trying, and then it was like Deja Disney. He just became crazy, yelling, crying, grabbing me, aggressively hugging me, the whole nine yards. I don't much care about the embarrassment of these public displays of insanity, though I don't much enjoy them. We called Sam to come pick us up, and it seemed like he took forever to arrive. By then I disliked all my children. Ariel for bitching about dinner choices, Noah for losing his marbles, and Sam for taking his sweet time to rescue us. Rewinding to the earlier part of my day, it's funny to think that a room full of people whose public parenting styles were completely deflating--if not terrifying--could seem more appealing than my outwardly bucolic home life. But such are the ironies, inconsistencies and surprises that rock and roll my world...

Down the Rabbit Hole in Monthly Installments

Just when you think things can't get much worse for you as a parent, you reach a new low. Mine came at about 5:30 a.m. on a Monday morning. I couldn't sleep, since I kept going over in my head the weekend's missteps and aggravations, so I went down to the basement and turned on the boob tube. At least I wouldn't keep anyone else awake. As I channel surfed, I came across an infomercial from a guy who was selling his parenting program, which he of course developed after years of counseling parents in his private practice. He hit all the right buttons: "Is your child defiant? Is conflict a constant in your household? Do you find yourself repeating strategies that don't work?" And on and on. So I picked up the phone. Alice in Maine was lovely, commiserating with me in my misery. The program transformed her relationship with her own daughter. Yes, I could get my money back, once I submitted the required written evaluations. But I must fill in ALL the required fields; no blanks allowed. I don't think I believe the money refund promise, but I will get AMEX to help me argue that one. I did have enough presence of mind to decline the monthly phone support at $49.95, but I figure that even if I get stuck paying the three monthly installments of $119.95, I'm still way ahead, compared with private counseling. And who knows, maybe James Lehman can actually help me salvage my role as a parent. If not, my kids can tell the story of their desperate, gullible mama , to great guffaws, to whichever therapist(s) they choose to bitch about me to. As long as they do it on their own dime...

Not Even 24 Hours

Len and I were on the tarmac at JFK, having just landed, when the call came. It was Ariel, desperately trying to convince her dad that she should be allowed to skip her Hebrew School graduation. I had said to Len hours before that I hoped we could find a way to sustain the feeling of calm and relaxation that washed over us during our parents-only getaway. We didn't even make it home before typical aggravations reached us. Things got worse the following evening, with Len unleashing his fury at Ariel for not cooperating when he asked her to practice trope with him before doing her French homework. In a typical bit of stubborn power-playing, Ariel refused, then lied, and Len just exploded. I understand why he did, but it was a miserable, regrettable turn of events. And for some reason, I was on the receiving end of the next morning's hate mail by text from my daughter. I felt so sad and deflated, so defeated and incapable. How could two parents, who love their children as much as we love ours, wind up in this situation, cornered like dogs by repeating patterns of behavior and response? Are we just too stupid to figure out how to parent? Are we too weak and too easily outsmarted? Len seemed to think I was angry with him; I was not. I am just too tired for this conflict, whether it's him with her, she and I, or some other combination. I just want what my friend Misha talks of, Shalom Bayit.

Bed Bunnies

I was recently exchanging opinions with a friend about breast feeding. This was in response to a recent magazine cover of a mom whose 3 year old son is shown standing--and nursing--at her breast. I am an advocate of breast feeding, and breast fed all of my kids for as long as they were interested (about a year). I think I would have cut them off if it went much beyond that, because it gets painful when they have teeth, and it's just a little weird, I think, when they can ask for it. But that's my personal opinion, and I've no quarrel with a woman who chooses to breast feed forever. I thought about this as I snuggled this morning with my 16 year old son. That's our ritual, both before he goes into his own bed at night, and before he goes to school in the morning. There's nothing remotely sexual about this; he just loves--and needs--to snuggle. It's such a precious few minutes of warmth and close calm for him and me that I wouldn't give it up for anything. But I wonder, would viewers of a photo of us snuggling impute nefarious motives to him, or to me? It's heartbreaking to think so, but such is our world of judgment and sexualization. When we couldn't get our kids out of our bed years ago, I prevailed upon my husband to get a bigger bed. King size, it is. And my happiest moments are when it's a family bed, when my eldest comes in to watch a movie with us, when my youngest brings her bellyache to be soothed with snuggling and bad tv, and of course when my middle man comes for his dose of snuggle love. So to the moms who want to breast feed forever, if it works for you, go for it. I can think it's weird or painful, but you can think the same of my snuggling with a sixteen year old. I've no business trampling on your pleasure and intimacy, nor you on mine. And we certainly have it over men here, don't we? They'll never know what they've been missing out on...

Colorado Dreaming

So at Starbuck's this evening, we were chatting with Noah. Len told Noah that he would take him skiing next winter and asked where he would like to go. Noah's answer came back as expected: "Colorado." I then asked Noah if we would need to look for a ski program for autistic kids. "No." "Are you autistic, Noah?" "No." "What are you?" "Just good." Yup, that about sums it up.

The Gift That Keeps On Giving

Noah brought home his My Book About Me this week.  As I read through it I thought, "This is not your typical teenager's self-assessment.  No, it's far more amazing and wonderful than that."  Much in the book was familiar, but lovely still.  Favorite color:  blue.  Favorite food:  chicken.  Favorite song:  Jellyman Kelly.  I did learn that Noah's favorite place to be is a restaurant.  I would have thought the Museum of Natural History or the zoo.

What does Noah's name mean:  Nice Obedient Able Hopeful.  I melted over that, though I paused a bit when I got to obedient.  It's true, for the most part, but it also worries me.  Will Noah know when in life to stand up for himself, when it's necessary--or even urgent--not to be obedient?  God I hope so.

If Noah could be an ice cream flavor, he would be chocolate.  He would be Oscar, if he could be any cartoon character.  His superpower would be the ability to fly, which meshes perfectly with his desire to be a pilot when he grows up.  And here is Noah in a nutshell:  If I won the lottery, I would Share.


Noah is special because he likes to dance, read books, and eat apples and oranges.  Flowers make him happy.  He's scared of the rain.  And tickle makes him laugh.  He wants to travel to Colorado.

I've always believed that the greatest power lies in simplicity.  Most of us spend way too much time turning molehills into mountains.  Here's a child--a young man, actually--who turns great adversity into simple truth and beauty.  There is something spectacular and miraculous in that.  I feel so privileged to be able to learn from this incredibly-abled teacher.  I just hope that he considers me a worthy student.  Flowers, sharing and flying.  Indeed.

Feeling Failing

I sent my eldest son a text yesterday, telling him that we have something new in common: I had a crummy job interview too. He'd complained to me back in March that he thought he did poorly in a job interview and I told him at the time that everyone feels that way at least some of the time, that I am a lot older and have felt that way too. Little did I know that a month and change later, I would be having one of those crummy interview experiences. But what was charming and lovely was Sam's response to my text message: "Awwww Mommy, I'm sorry." Love and life are certainly reciprocal experiences, only meaningful when shared in relationship to others. As a parent, it feels like I always have to be the strong one, the tree to be leaned against. Sometimes though, I feel like the bent branch. I hesitate to show that vulnerability to my kids, but then I think that they need to see it, to know that strength is not only found in steely stoicism. One of the most enduring memories I have of my father is seeing him cry. Even then, I knew it took a unique strength for a man to cry, and a superhuman strength for him to do it in front of his children. In that circle of life and memory way that I live, one of the times I regularly show my vulnerability is when I go to the cemetery. Sam and I have gone together on several occasions, and I always tell him, through my tears, how much I hate that place, how I cannot stand that this is where my father--his grandfather--is. I don't want to pretend a reverence for that place that I don't feel. I hate that the cemetery is in an ugly urban neighborhood, that the people who live near it have no feeling for the people buried there. I want my kids to know that it's ok to push against convention, to say out loud what other people might only whisper to themselves. In a funny way, that's exactly what parenting an autistic child teaches you. There are not just the myriad lessons about failure, but the many more lessons Noah teaches me about what real honesty looks and sounds like. He only knows how to be who he is. There is no other persona he can put on display for an interview. God, that must be liberating. Just to be. I think I come close most of the time but this week, I left some important part of me in the waiting room, or so it felt. Maybe the questions just seemed so stilted and dull that I couldn't quite connect. As my husband often says, I have no bullshit factor, no poker face. So in those "sell yourself" moments, I am as handicapped as I can be. Ah well, such is life. Sometimes, all clicks and flows. Other times, you feel like the only person on the dance floor with no rhythm. But then the person who is supposed to lean on and look up to you reaches out and let's you know it's okay. Failing isn't the end of the world. It's just being human.

Why a Jungle?

I named this blog some time ago, giving a bit of thought to what I would call it.  I wanted a name that I thought would be a little clever, would be easy to remember, and would readily suggest the complexity of parenting, especially when it involves a child with special needs.

Lately though, I've been giving more thought to the word 'jungle' and the aptness of it.  It occurs to me that the name is a much better fit than I realized when I rather casually chose it.  That's because since I gave the blog its name, I have actually been to a real jungle, and I came away with a sense of wonder about the place that goes far beyond the easy images of dense greenery, mud and mosquitoes that might come immediately to mind.

The jungle I was in was dense, lush, water-logged, and both loud and quiet.  It was incredibly calming to me; I could actually feel my heart rate slow in that extraordinary place.  It was also a wonderland of life, but one I was hard-pressed to appreciate without the insight (and incredible vision) of our guides, who could find a tiny poison dart frog in a sea of green leaves.  There were ants, bats, spiders, snakes, howler monkeys, parrots, anacondas and too many birds to name.  Each had its place in the jungle.  Each took from it the sustenance it needed, sometimes at the expense of other creatures.  To listen at night to the calls of the howler monkeys was magical and incredibly spooky.  And to walk in the jungle at night, carrying only a small flashlight, was to appreciate what true darkness is, and to understand that darkness masks a world teeming with life.

So what on earth does any of this have to do with parenting, much less with autism?  It's rather simple, I think.  Parenting involves far less control than we think it does.  There are rhythms children follow that are natural to them, that we might redirect a bit, but not change entirely.  There is mystery and magic in parenting.  There is wonder, and there is fear.  There is complexity hidden beneath the surface of how our kids appear to us and to others, in how they present themselves.  There is dependency in families; there are needs each of us has that others of us respond to.  Some are dominant, others are dependent.  And finally, there is no linear understanding of parenting that leads you from point A to some destination at point Z.  There are, however, many discoveries along the way, some desirable, some terrifying.  And stopping to look, to really look, and to listen, to really listen, may be the most important gift we bequeath ourselves as parents.

I don't know that my eyes and ears have ever been more open than they were during my few days in the jungle.  Things I would have thought myself terrified of became magical memories that I would not trade for anything.  When I tell people that I swam in a lagoon that is home to piranha, anaconda and cayman, they react with disbelief.  I do too, but mostly because I have never considered myself brave.  But then I never considered myself mother material either.  Pushing past my fears and opening my heart and mind to the wonders of nature taught me something about giving in to mystery, to what is unknown, unseen, and undiscovered.  Not a bad prescription for how to approach parenting.  Hence, the name.

Of Conferences and Creaming

I spent a full day recently at a conference about culture and autism.  There were some interesting presentations, especially one from The New York Times writer who penned a lengthy article about a New Jersey boy's transition from high school to adulthood.  Another was from an anthropologist who provided interesting insights into the different ways in which autism is understood and lived in other cultures.  I stayed until the end to hear a panel presentation about employment for individuals with disabilities, as I've been worried for years now about what happens when the school bus stops coming for Noah.

What I realized is that while it's possible to take a nugget or two of learning from these conferences, they are no substitute for the deep, relentless, day-to-day advocacy that parents engage in as the front line defense between their kids and the real world.  No single story is going to tell me what the path for my child is going to be, even if it's 7,400 words' worth in The New York Times.  Each journey is unique, and while I might be able to glean something from someone else's story, mostly I'm left to realize that what Justin in New Jersey experiences has almost no bearing on the life of Noah in New York.  And perhaps it's unkind of me, but I start to focus on things like:  Well, did his mom work full-time outside the home like I did for years and years?  Does Justin have other siblings who demanded time and attention from his parents as well?

There's something that probably smacks of gross competitiveness or sour grapes in that, and I'll own it, if that's how it comes across.  But unless you walk in my shoes, it's hard to explain how other people's success stories, rather than feeling like inspiration to a parent like me, can feel like a reproof, like a harsh critique of what I haven't done, should have done, etc.  But then I think of the child I have, the life he leads, the love he knows, and there is no competition.  He is who he is meant to be, and there is no mirror with some other boy's image that should ever be held up to him.

My heart also ached for the mother who asked about the more disabled kids on the spectrum who get closed or booted out of programs.  Ah, the creaming issue.  That one sticks in my craw too.  Everyone wants to serve the kid with Asperger's who is literate, conversational, and has an above-average IQ.  Ain't  no one lining up for the kids who are aggressive and have IQs in the mentally retarded range.  Success is awfully easy for programs to latch onto when they stack the deck in their favor, as some clearly do.  They just conveniently ignore the wreckage they leave outside their closed and barred gates, the kids and families who have no place to go, no outlets, no respite.  No hope.

I left the conference feeling that it was, up to a point, time well spent.  I had the good fortune to walk the distance to the train station with a lovely woman who helps kids like Noah find jobs, and I look forward to connecting with her.  She doesn't know me, but was very encouraging about my mothering skills based on what I told her of Noah's path thus far.  Maybe she was just being polite, but I'll take my encouragement where I can get it.  It's a little pocketful of sunshine, a hedge against the inevitable bad, brooding day somewhere on the horizon.

Article (instead of link) for Reflections, Reflections

Showing off my limited tech skills, here's the full article, for which I tried to provide a link in Reflections, Reflections...

The story of Richard Williams, once a 21−year−old with the potential to become the best tennis player in America, was longer lost than the ship upon which the unique thread of his story was woven.

To be precise, the Titanic had gone undiscovered for 73 years before explorers found it 1,200 feet below the sea’s surface. It’s now 100 years and a few days later, and Williams’ heroism still goes unnoticed.

As David Whitley, a columnist for AOL FanHouse, reported on Saturday, Williams and his father Charles were unruffled by the initial jerk of the Titanic crashing into the iceberg. “After all,” Whitley wrote, “the Titanic was considered unsinkable.”

That fateful night, Richard Williams shouldered down a door to rescue a trapped passenger, acted as a life preserver for a man who couldn’t fit onto a decaying lifeboat and survived five hours of 28−degree water.

He also lost his father.

Every so often, a story is written about a young man or woman who has overcome all odds to excel at something, whatever it may be. What typically is left out, however, is the kind of lives that these people lead. Richard Williams led an exemplary one, and it’s a damn shame that his own improbable journey has been lost among the many annals of that tragedy.

When a rescue boat finally arrived close to dawn, Richard, despondent over the loss of his father whom he had seen just hours earlier in good health, went down beneath the deck to have his legs examined.

The doctor’s prognosis was dire — gangrene, he said — yet Williams brazenly refused amputation. Two years later, in an extraordinary triumph of the human spirit, he would become one of the best tennis players in the world.

His wife once commented that if you were to speak to him, you’d never know that he played tennis, much less that he won the 1912 U.S. mixed doubles championship, the 1914 and 1916 U.S. singles championships, the 1920 Wimbledon men’s doubles championships and an Olympic gold in 1924.

Or that he earned the Chevalier de la Legion d’Honneur and Croix de Guerre while serving in the American army during World War I, became a wealthy Philadelphia−based investment banker and philanthropist and served as the president of the Historical Society of Pennsylvania.

One might argue that a man’s mettle is seen most clearly in the face of daunting opposition and that is certainly a legitimate assertion. But I believe that the way in which Williams carried himself after his Titanic misadventure speaks volumes more about his character than his heroics on the ship ever could.

The act of going quietly about one’s business is irretrievably lost on this generation. In an age fraught with social media, most of us who amount to something of renown tend to tweet about it or boast about it on Facebook.

It would not be a stretch to add that the increasing availability of social networks has contributed heavily to the demise of humility. People not only feel the need to communicate each of their successes, but they can now satisfy that need on whatever sites they’re members of.

So thank you, Mr. Williams, for living the kind of life that we all should strive to emulate. Your story is at once inspiring and vital, as it marries success and modesty in a perfect demonstration of how greatness does not have to supersede, and can instead coexist with, first−rate character.

Let this be a lesson to us all: No matter the material wealth and accomplishments you rack up, do not lose sight of what’s important. I, for one, wouldn’t mind being remembered in the same vein as Richard Williams.

Reflections, Reflections

It's funny how life as a parent mutates over time. It goes from your children being totally dependent on you, the parent, to their growing apart and away, carving out their own space and way of being in the world. It's a process that can feel bittersweet. But it can also hold up to you a magic mirror, one in which you see the person you gave birth to reflected back at you as a unique human being but one who, for better or worse, embodies much of what you transmitted to him via DNA and life example. You hope--and maybe pray??--that the child you raise becomes someone you not only love, but someone you actually like, someone you would want to claim as your own if he weren't yours. It is a joy beyond words to really, really like your child, and to discover that not only through physical connection--seeing and spending time with him--but through finding out how he thinks, and what he thinks about. This link contains the latest magical discovery I have made. Http://www.tuftsdaily.com/sports/sam-gold-the-ot-1.2731467#.T5P_rQJWEcE.mailto If there is any sadness here, it only comes from thinking about the fact that Sam is so much the embodiment of my father, who lived a life of quiet, exceptional decency, yet did not live to see Sam embrace his own deep decency and thoughtfulness so wholeheartedly. Life is funny and heartbreaking that way: it can give you gifts of inheritance and gratitude, but steal some of those gifts right out from under you, so you are left with wistfulness where full-throated joy should be. Nevertheless, I have to believe that the person who is physically missing in my life--my father--is given back to me through my son, and through his own reflections and commentary on the world in which he lives. This, after all, is what real inheritance is, or ought to, be.

The Absent Child. The Good Soldier.

I wonder if anyone reading my musings knows I have a third child.  My daughter and Noah ("the autistic one") have made repeated appearances, but not so much (at all?) my eldest.  That's no reflection on my affection for him, which is as great as it is for his siblings.  I think it's more a reflection on his physical absence, and on his overall quiet presence.

Sam is off on his post-high school journey, well-earned and well-timed.  He was probably ready to leave a year before he did, and not because of difficulties at home, but due to boredom with the whole high school experience.  In terms of his home life though, I wonder if he's relieved to relinquish his role as the good soldier.

While my husband and I joke that Noah is sandwiched between the ideal siblings--passive and aggressive--that's actually quite true.  Ariel is out there with her critiques and with her helpful advice about Noah.  Sam has made an art of not complaining.  Perhaps that's why I was taken aback--and pleasantly surprised at the same time--when Sam told me, not long before he left for school, that he never really had a playmate in his little brother, that he missed out on that.

For Sam, that tiny bit of revelation spoke volumes.  He was finally saying out loud what he'd lost in having an autistic brother.  And it was a lot.  The boys are only two years apart chronologically, but universes apart developmentally.  It must have been painful for Sam to have a little brother and yet not really have one.  He saw the things his friends did with their younger brothers, and he must have imagined even more.  He knew from his own experience what it felt like to be embarrassed in public, to fume in private.  And yet...

Sam has become--and probably always was--a deeply compassionate young man, someone who has a real loathing for braggarts and others consumed with themselves.  He has on his own chosen to work with developmentally disabled children, teens and adults, though he has not gone out of his way to help his brother.  He has not thwarted Noah in any way, and has done whatever we've asked in terms of helping Noah, but he has not made a point of reaching out proactively, or helping us understand Noah better, the way Ariel has.  There's no judgment in that; I think everyone in the orbit of the disability asteroid protects himself however he can.  Sam found his own way.

And maybe that's the embedded lesson here:  each of us finds his own way.  For some of us, it's a constant flurry of activity, to try to "fix" our child and his functioning; for others of us, it's giving our breath--almost literally--to that child, to the point of depriving ourselves; for still others it's a whiplash walk between love and hate; and it can even be an evolution of understanding, both of ourselves and our place in the family orbit.  Each journey has its gliding moments and its rattling turbulence, but we still stand a chance of arriving at exactly the right destination.  And if we're lucky, we might even arrive together.

Stepford Mommies

This morning, as I was working my way through my to-do list: schedule camp check ups; call surgeon with last-minute questions; cancel Boston Globe subscription; and read file before work call, I had one of the morning "news" shows on mute in the background. I noticed on the ticker at the bottom of the screen that some uber-successful mommy blogger was coming on to discuss her failed marriage and of course her new book. Then I saw her: perfectly coiffed blonde, not a hair, tooth, or piece of flab out of place. I had many thoughts, one of which was "How about they flip the script for a change and try this: Matt Lauer will be interviewing a harried working mom, who does not have the luxury of sitting home in her PJs making money by sharing advice on which baby stroller or formula to buy. This mom has spent decades commuting full time and only got off that train after her father died, and in anticipation of her autistic son's entry to middle school. This mom does not have perfectly coiffed blond hair, but she does have crooked teeth and dark circles under her eyes. Her hair wouldn't know how to behave if a four star general commanded it to. This mom spent a solid month of ten and twelve hour days in a NYC hospital after her father's lung cancer surgery, to make sure the doctors and nurses there did not abuse or kill him. She held work meetings at the StArbuck's across the street to keep from falling behind at work and getting fired. In the process, she managed to be her office's single most productive employee. Before each morning's journey to the hospital, she kissed her kids and her husban, and left him to carry the heavier home load. She tried to remember to thank him, but probably forgot, in her exhaustion. She attended school conferences, SEPTA meetings, recitals and anything else that was about parental obligation. Her dark circles grew bigger. She continued to keep journals about her kids, which she had done since each was born. The oldest is now eighteen, and the journal writing continues, albeit more sporadically. She finds more joy in the kindness of her kids to one another and the embrace of her husband than most people find in conquering Everest. She saves kind emails from friends and colleagues because they make her smile, and lift her up on down days. And she never, ever expects to get a call for a TV interview from Matt Lauer."

Sadness of the Heartery

Sometimes, I think I live in denial.  And I'm not just saying that because the season of Passover is upon us, and there are lots of Nile/De-Nile(ial) jokes floating around.  I think I may need denial to get through my parenting gig.  Otherwise, I might just throw in the towel.

This isn't about being the best parent, having the best kids (whatever that means), or otherwise grabbing the brass ring of parenting.  It's about the fact that I have the thing I continually refuse to admit out loud:  an incredibly hard road with a profoundly disabled child.  And that causes incalculable damage to everyone else in our immediate, nuclear family orbit.  This may sound dramatic--perhaps even exaggerated--but it's actually the clearest truth about my life.  And the thing I do mental and emotional cartwheels to pretend is not the case.

In the recent space of less than 24 hours, I thought my husband was going to run away; I heard my daughter repeatedly call my son a "f....g idiot" and I heard my son endlessly go on with "I said 'shut up' to my sister!!" In this same time span, I literally jumped on top of Noah at one point to keep him from getting the Ipad (long story), only to realize that he's got physical strength I never knew he had.  Ariel then tried to come to my rescue and I fell on her, hurting her arm.  It would probably look funny to an outsider, a kind of Three Stooges set piece of pratfalls and head-bangs.  But this was all too real.  And sad.

Night-into-morning did not bring the hoped-for relief.  Noah was back to obsessing again about his DVD player, which couldn't be charged, since he left the chord home.  No amount of explaining would help him understand that once we got home, he could use his player again.  It got so bad that on top of his verbal obsessing, he was crying real tears in the Florida airport, and I worried that we'd be the reason the pilot would have to initiate an emergency landing once we were airborne.

The look of fatigue and anger on my husband's face, a carryover from the day before, but just more intense, was heartbreaking.  It was the look, if you've ever seen one of the face of someone you love, that says:  "Don't try to console me.  Don't touch me.  Don't talk to me.  I'm just rage right now."  So I didn't even have my partner to lean on.  All I had was my cockeyed hope--the one I brought with me when we took my dying father, with his metastasized lung cancer and Alzheimer's to Israel--that somehow, I would make the flight home work.  I would sit with Noah; I would distract him; I would get him to forget the DVD player.  Truth be told, I had no game plan.  I just knew I had to make it work.  Just like with my dad.  Noah was my model for my father back in 2006; my father was my model for Noah now.

I told Noah a couple of days ago that when he gets upset or angry, and when he says mean things to his sister, it makes my heart sad.  A day or so later, when Noah was struggling with his own anger and disappointment and his inability to understand my explanations about his DVD player, he said to me, "Is my heart sad, Mommy?"  I don't know Noah.  I'm not smart enough to know; I'm not strong enough to know.  I'm just dumb and dedicated enough to keep trying to figure it out.

Pavlov Lives

Though not proud to admit it, I sometimes think of my middle son and trained animals in the same instant. You can get dogs, cats, seals, dolphins and other animals to "perform" once they have been adequately trained. Though it might pain other parents to hear it, autistic kids have a lot in common with trained animals. Ok, I take that back. To save myself any hate mail, I will insist that only MY autistic child has a lot in common with trained animals. That fact is brought home to me again and again, but most recently on a family vacation. My husband pointed out a crane (the bird) to my daughter. When Noah heard the word 'crane' he immediately piped up with "a crane is a piece of construction equipment which lifts heavy things." That came straight from the vault of construction information, one which Noah dips into repeatedly as a way to start his idea of a conversation. Other topics include farm equipment, animal facts and other plug-and-play information that Noah programs into himself when he needs or wants to communicate. Pavlov's dogs perhaps pre-figured kids like Noah. At this point though, I think Noah has out-Pavloved Pavlov. Not sure if that's good news or not. It just is. And so is Noah. He just is, animal comparisons and all.

Paging Social Services!

I had lunch with a colleague and coffee with a friend on the same day.  In both conversations, we came around to family matters, after chatting a bit about work-related stuff.  I have the oldest kids among the three of us, so supposedly I have some wisdom to share.  Well, the wisdom this day went something like this:

So, I got into a not atypical argument with my daughter recently, and at one point I found myself at the top of the stairs, looking down at her.  That's when I screamed the following:  "If I were a different kind of mother, you'd be dead by now!!"  Exactly what kind of mother? you might be asking, since the one doing the screaming seems pretty off the wall.  I was actually thinking of parents who beat their kids, if that distinction is helpful.

But was I any different from a parent who whacks a child or worse?  After all, here I was berating my daughter with my words, leaving her to wonder what kind of lunatic is half in charge of raising her.  Just another one of those moments when you ponder your capacity to raise kids, or even your willingness to do so.  My daughter rightly called me out on my behavior, telling me I was behaving like a child.  Yes I was.  An angry, petulant, frustrated child.  I was lashing out with my tongue, rather than my fists, but there isn't really much difference.  Some might even say that physical wounds heal, but psychic wounds...

In the morning I did what I'm not sure parents are supposed to do (at least I'm pretty sure there's some parent guru who'd say parents shouldn't), and I apologized to my daughter, telling her that in fact she was right, I had behaved like a child.

Strangely enough, neither my lunch nor coffee companion fled from me.  In fact, each seemed to listen as I offered my experience/advice regarding homework, maturation, independence, etc.  I'm going to assume that each one considers me a normal, dedicated, loving mom who had one really, really bad moment.

Raise your hand if any of this sounds familiar.  If it doesn't, maybe this blog is not for you.

Things That Keep us up at Night, or Rock Us to Sleep

My husband, the wiser of the two in our relationship, always tells me that you never know what goes on behind closed doors, among other families, and in other relationships. Truer words have never been spoken.

We had dinner Friday night at the home of a lovely family. Our eldest kids have become good friends. Noah was of course with us, and it's not hard to see that he's an odd duck. He asked if he could read Once Upon a Potty and sang some silly songs, but he sat like a prince at the dinner table, even though there was nothing he would eat, save white rice.

After the meal ended and the kids scattered, the other mom and I got to chatting. She is a calm, gracious, stunningly beautiful woman, and it was a bit jarring to hear her talk about her fears for one of her sons, who struggles with anxiety. He takes medication, and has access to a therapist at college, as well as a psychiatrist at home. But as she pointed out, he's a big boy, and she can't force him to take his meds. Now the anxiety has morphed into hypochondria, with her son thinking that chest pain means he has lung cancer.

She worries about the ways in which her son's anxiety will interfere with his path in the world. How will he manage? Will his hypochondria get worse? How will he hold down a job if he thinks he's dying? I listened sympathetically and I thought, my husband is so right. We all have stuff.

I encouraged this mom to focus on the positives, on her son's seamless transition to college, on his strong relationship with his roommate, on his ability to navigate the social world at school, etc. I told her that that's what I do vis a vis Noah. I don't ignore the challenges; I just try to flip the equation and focus on the positives.

This dinner conversation brought to mind other friends and their kids, and what we carry as parents. I have friends with bi-polar children. A friend I spoke with the other day told me of his son's homelessness. That son is living out West with a girl he met. She lost her child (not his) to social services, and they've been on and off the streets. Another friend told me that he's done all he can for his drug-addicted son (who's also dealing). He just hopes somehow to keep his son out of jail. The weight we carry.

I think that's why I have no patience for the parents who focus on nonsense. You know who you are, and you know what I mean. There are parents in this world who have real trouble, real heartache. The interesting thing is, they don't trumpet it. They don't whine out loud about it. Mostly they just put one foot in front of the other and go. They are the best parents I know, not because they're perfect, but because they've internalized what parenting really is: it's finding a way to balance the love you have for your child against all that you cannot do to "fix" that child. It's the hardest, worst, and most important lesson we'll ever learn.

Fear of Bathrooms and Other Ordinary Places

I gave Noah precise instructions: "Do not get up from this table until I come back. I am going to the bathroom across the hall. What are you going to do when I go to the bathroom?" "I am going to stay" came the reply. "Are you going to get up and leave?" "No." Ok, off I scurried to the ladies room.

But first I did what I always do when I am alone with Noah and need to use a bathroom. I checked my watch, to mark the time I left him, and I inventoried him in my head for security personnel: "He's about 5 feet 10 inches tall with dark red hair. He's wearing a dark green t-shirt with trolley cars across the front. He's wearing dark gray sports pants with a double black stripe down the side, and black adidas sneakers with white stripes on the side. He knows his name and mine, but he also uses silly talk from Barney and Sesame Street to communicate, so you have to push past that to get the real information you need from him."

In a busy place like the Museum of Natural History, my heart lodged fully in my throat and as I left Noah, I prayed for no lines in the women's bathroom. Mercifully, there were no lines, and no one can do her business as fast as a mom who just left her disabled child alone in the very crowded cafeteria of a very crowded museum. And my husband wonders why I drink and eat so little!!

Truth be told though, these moments are not as terrifying as they once were, because Noah understands more, is not inclined to wander as he once often did, and can communicate about his needs. But this doesn't mean I'm relaxed and confident when I leave him alone; it just means I'm slightly less terrified.

I can recall moments when I honestly thought I would die, because I had lost Noah, and though the elapsed time was in minutes, it felt like years. There was the first time, in a mall in Massachusetts. My husband thought I had Noah and I thought he had Noah. Of course neither of us had him. I beat into myself early on that if he leaves, I head for the exits; I don't waste time asking around if anyone has seen him. This store had no door; it just opened out onto the main corridor of the mall, and there was my tiny, gorgeous, lost boy, about to take a step over the threshold and away from me. Death number one.

Death number two came in Florida, when we managed to lose Noah in the Miami acquarium. We were so distressed about the prospect that he could be anywhere that we immediately flagged security to initiate whatever lockdown code it is they initiate when a child like Noah goes missing. We found him a while later in one of the buildings. Was it the cafe? An exhibit hall? I don't remember at this point. But we found him, and my heart started beating again.

Death number three came at Nassau Coliseum, a place I can't stand on a good day. But I was there for some kiddie thing with a friend and Noah had to go to the bathroom. I thought to take him to the women's bathroom, but he was old enough that I wanted to give him the chance to practice his independence. And what could go wrong? After all, I was stationed right outside the exit door, so he would have to walk past me on this way out.

I checked my watch, per my ingrained practice. Five minutes went by. Okay, I can live with that. Maybe he had to do more than urinate. But between five and ten minutes, I started asking men coming out if they'd seen a redheaded boy. No sightings, but one guy mentioned that there was another exit on the other side. Another exit??!?!?!?!? Brain explosion. Heart racing. Heart stopping and head racing. I ran to the other side (the bathroom, I discovered was on a curve). What to do?!?!?!? Once I started breathing again, I did the only thing I could think to do, after offering up to any god who would listen anything it would want if only my son returned to me ok. I opened to the door to the men's room, announced "Incoming woman" and putting my hand to the side of my face to block the view of the urinals, raced to the stalls. And there I found Noah, finishing his business.

Aging ten years doesn't begin to describe the effect of that incident. I truly think I died, and that finding Noah was the only thing that revived me. The Natural History Museum bathroom run was a piece of cake compared with these earlier incidents, but each time I leave him alone, surrounded by strangers--or he leaves me--my heart skips beats, my head races, I pray to whoever might be listening, and if need be, I apologize in advance to my poor, put upon bladder.

Of Chocolate and Stethescopes

My wonderful friend L texted me the other day to share the insanity of her having scheduled her son's CSE and annual physical for the same day. CSE went off without a hitch; doctor's visit just didn't come off. Unless of course you count an in-the-car attempt to do an exam.

I offered the contents of my medicine cabinet and some wine or beer to take the edge off the stresses of the day. She suggested chocolate. I ALWAYS have chocolate, so she came over and we commiserated. I heard about how her son went into the exam room but lost it for some reason when he saw the scale. He left the exam room, screaming, but unbeknownst to her, he also left the building. Luckily, amazing Dr. F trailed right after him, all the way to the car.

They tried an exam with petite Dr. F reaching around from the back seat to try to listen to her son's heart, all while he was screaming. Dr. F. probably suffered some hearing loss, but he's not the type to sweat or resent that.

The comi-tragedy of the failed exam was capped off with Nurse M's coming out to greet L's son, because she could not have him leave without her giving him her usual warm greeting.

I listened and laughed. It was all so wonderfully absurd, frustrating, ridiculous and familiar. To have a doctor who gets it, who will follow your son out to the car and try to do a back-to-front exam is something special, something only parents like L and I get to experience. People like Dr. F are unsung heros, except to parents like us. Yes, he has a disabled daughter, so maybe he's hard-wired for compassion in this regard, but Nurse M doesn't, so there's something else going on.

Whatever it is, L and I know to be profoundly grateful for it, to laugh over it, and to drown the lingering effects of a tough day in chocolate.

Alone in a World of Connectedness

There's much commentary about our "wired" world, and increasing commentary about the need to unplug and the value of doing so. All this got me to thinking about how and why it is that so many people (at least in my unscientific view) seem to feel so lonely, so disconnected.

It goes back to something my wise friend Eileen told me years ago. She's a social worker, and the program she ran worked with kids in a NYC middle school. She told me how teachers didn't ask kids about their personal lives, about their struggles. It wasn't because they didn't care; it was because if they asked, they'd feel obligated to try to help, and they didn't feel equipped to do so. Not seeing became the operative mode for these teachers, because in not seeing, they were not obligated to respond. Reminds me a bit of those famous monkeys, though we are not necessarily talking about evil here, but about the basic human need for compassion, for concern, for a little help.

I remember vividly being in synagogue with my autistic son. This was years ago, probably seven or more, and it feels like yesterday. Noah was just a disaster, crying and carrying on, being as difficult as seemed humanly possible for him to be. I retreated to a lobby area outside the main sanctuary. I sat there, slumped and sobbing. Not one person who saw me came over. Not one asked if I was ok. No one took the time to reach out and ask if I needed anything--a shoulder, a cup of water, some rope to hang myself. Nothing. Not a word. Not a stitch of human interest or empathy.

OK, I wasn't sprawled on the floor, pounding my fists and screaming, but I was clearly in distress. And no one gave a damn. Not one single person. I get why people shy away from reaching out to strangers on the street (I was once slugged in the chest by a homeless man), but this was not that. I was in a confined, private space. I'm a member, for god's sake. Even if I was just a visitor, how could not one person step up and ask. How could not one person choose to see me?

How much harder is it to be seen and heard in a world cluttered with input/feedback/opinion/commentary. We're inundated with emails, tweets, videos, FB posts, etc. etc. etc. But do we ever really see and hear one another? Our political discourse is all about talking past one another, whether on the left or the right. Maybe the larger populace is taking its cues from our so-called leaders, who choose not to engage one another, but rather to bait, mock, or ignore one another.

I was deeply, deeply touched by another mom of an autistic child who told me that I was the first person to make her feel that she was not alone. Hearing that made me feel nothing short of triumphant. We seem too often only to care about "big wins" where we can say we cornered a market, scored the most twitter followers, or are otherwise validated by large numbers.

I live, for better or worse, in a world of small victories. I don't care much about changing the world because it's a fool's mission (at least for me). But if I can notice the person next to me, make her feel valued, offer a tissue for her tears, and share my own similar journey, I will have done something to change one life. Even if only for a moment, even if only for one day, that somehow feels like a real victory. To forge a connection with another human being is not to be taken for granted. It might--and especially in our hyper-connected world--be the only thing that really matters. At least it is to me.

The Marriage Price

In a family with children, there are always stresses. Hell, in families without kids there are stresses. But there's something about a disability in the mix that creates a kind of slow-burn heartache that's impossible to describe to outsiders.

This has nothing to do with self-pity; I think parents of disabled kids are heroically un-self pitying. It's more about the psychic aches and pains that lodge themselves inside us, and seep out unexpectedly, corroding the bond between husband and wife.

We work so hard, at least my husband and I do, to walk the walk of raising our kids together. United front, etc. But it can be so exhausting. And balancing the anger and expectations of our non-disabled kids just adds another bit of complexity.

Sometimes, I find myself retreating to a place of quiet, smoldering fury. I'm not angry at anyone; at least I don't think I am. I just become this thing of coiled anger, tired of trying to be supportive, encouraging, diplomatic, loving, indulgent, strict, observant, and on and on and on. Fatigue morphs into something ugly. It passes pretty quickly, but then I realize I've lost a day, or perhaps a weekend, time I won't get back. And that of course leaves me with at least a slight feeling of residual anger.

The real pain comes when I'm in that state and my husband tries to reach out. He'll want to hold my hand, and I'll ball up my fist, like a spoiled child. He of course assumes it's something he's done; I would assume the same. I could tell him what's bothering me, but at that moment, I'm just so tired of talking about the kids, about Noah, about his being stuck that day, of Ariel's being angry, of the weird looks we got in town because Noah was talking and gesticulating more strangely than usual in public. I just don't want to deal.

Years ago--whether as statement of fact or warning, I don't know--my husband told me that most marriages involving disabled kids end in divorce. It's easy to understand why. Yet it turns out that some of the best marriages I know are the ones that involve disabled kids. Maybe that's because we work ten times harder than other couples to make it work. We peel our hearts from our chests and put them squarely out there, on the line, for our kids to appreciate and/or stomp on. And we know that abandoning one another would have consequences way beyond those in a typical divorce. We'd be taking true dependents down with us. None of this is reason for someone in a horrid marriage to stay in one for the sake of a disabled child, but it puts our choices in a somewhat different context. The price of abandoning any marriage is steep. For couples like us, the price is just that much higher.

Saturday Night Social

It's funny how simple plans for a Saturday night can go awry. We thought we'd head out to a fundraiser/birthday party a few towns away. But then the tantrum started. I never know to expect them when there's no obvious trigger, and this evening there wasn't one.

I'd been out for a nice long walk earlier in the day with Noah. We stopped at a local coffee bar afterwards, and he got a bottle of water and some marble loaf cake. We stopped at Waldbaum's as I'd promised we would, so he could look for his lemon poppy seed muffins. No luck in finding the muffins, but he did score two bags of tortilla chips, another favorite snack.

Not sure exactly when or why things went off the rails, but they did. And they've been off for a while now. We've been hearing a lot of, "three times I said you be quiet!" or "three times I said you be happy!" Then of course there's "I said shut up to my sister!"

There was resistance to the dinner options offered to Noah. I told him to take whatever he wanted. No good. Back to "three times I said you be quiet!" and "you be happy!" In response to Noah's repeated statements about telling his sister to shut up, I finally chimed in and told him to shut up. Hey, if you can't beat the nut job you're with, maybe you'll feel better joining him.

I'm glad my daughter had a good day with her friends. Maybe that takes some of the edge off the misery of listening to her brother go round and round with his own stupidity, and listening to her parents alternatively engage and ignore him.

Not the most fun we've had on a Saturday night in our house, but not atypical.

When I was out walking with Noah this morning, I thought about the charming silliness of some of our conversations, as the one we were having then, when Noah asked if he was pretty and I said, "No, but you're pretty handsome." And he said, "I'm pretty pretty." Love that quirky, silly young man. I love the nut he became this evening too. I just don't like that version of him very much.

Children as Revelation(s)

We recently took an overseas trip with our two younger kids. It's not the first time we've gone overseas with our kids, but it is the first time we've gone only as a foursome. So many things could have gone wrong, as they always can when parents travel with children. And we're always primed for some extra complication when we travel with our autistic son. But I don't think I've ever come back from a vacation and said, as I did of this one: "It was perfect."

Yes, the weather gods cooperated beautifully. The plane flights going and coming home were smooth and on time. We met up with family from Paris (we were in Amsterdam) and everyone got along. But it was the way my own kids were that blew me away.

We arrived at our hotel/apartment and Noah discovered favorite hats--from the New England Aquarium and the Museum of Natural History--hadn't made it off the plane. He was upset. But that passed, quite quickly. Then his DVD player broke. A year or two ago, that would have ruined everything. It wasn't the fact that we had an Ipad to substitute that made things ok; it was that Noah accepted that disappointment and in fact took it upon himself to throw the broken player in the trash. In my book, that's about as close to a miracle as things get.

Ariel worked tirelessly to engage her French-speaking cousins. She walked and walked, whereas at home, a short walk into town prompts excuses and whining. But it was her interactions with Noah--and his with her--that blew me away. He asked her to be in photos with him. Out to dinner at a Chinese restaurant, he literally mimicked her when she picked up her water glass to drink. He asked to sit next to her on a canal boat ride. To say my cup overfloweth would be to radically understate my joy.

Some parents measure parenting success by trophies, by how many prizes their kids win, by the schools they get into, by their test scores. I measure success by how my disabled son and his siblings interact, by the ways they squabble--or don't--and above all, by the ways they find to love and show love for one another. Lifting a water glass in synch, reaching an arm around a sibling for a photo op, squeezing side by side on a boat--all might seem trivial to parents who set the bar in another place. To me, those things light me up inside like nothing else on this earth. And I know, for every other day that I do or will feel like a failure, that at the core of what I've done as a parent, there's some pretty awesome success.

Do Ya Do Ya Do Ya Wanna Dance?

Was that really Noah in the midst of a crowd of disabled peers this evening, dancing in the commons area of his high school? It didn't seem possible. After all, the space was crowded AND noisy, two no-nos in my autistic son's world. But maybe this is part of some larger transformation; maybe this is Noah practicing being social because he wants to be. All I know is, my husband and I were chatting for a few minutes with a school aide, and when we turned to look around for him, there was our son, the redheaded beanpole, right in the mix of things, with a big smile on his face. Amazing to see. Freeze the image in my brain, and beat a hasty retreat. Parents were not invited to stay. And rightly so. This was a night for the teens to party. Disabled or not, anyone can wanna dance.