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.