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.

Flotsam and Jetsam

It's not very nice of me, I know, but when I went inside the teen lounge at the JCC on Saturday night to pick Noah up, I couldn't help but think of the kids there as the "flotsam and jetsam" of the teen world. These were the misfits, the socially awkward, the physically gawky. And my child was among them.

There's no shame in that, but there is indeed a good measure of sorrow. It's hard for me not to see a group of teens and young adults such as these and think of words like 'discards' and 'remainder.' Not kind on my part, but at least honest, if that's worth anything. And it didn't help that as I slipped past folks milling outside the lounge's door to find my son, I saw him slumped on a couch, with a look on his face that seemed both pained and sad. Had he been crying, I wondered.

As I got closer, Noah's face seemed to brighten, and I realized that the outline of sorrow I thought I'd seen at a distance either hadn't been there, or had vanished. But what I saw instead was even more disturbing. Noah sat in the middle, on a cheap vinyl coach, and to his right sat another teen, slumped even lower than Noah had been. To Noah's right sat two teens fairly passionately kissing. Just great. I sent my disabled, highly communicatively impaired child to a program that allows other impaired teens to probe the inside of each other's mouths and god knows what else, inches away from other impaired teens. And where the hell were the staff? Is this being encouraged as "typical" behavior?

Don't get me wrong; I don't begrudge disabled teens their hormonal impulses, but these are not kids who necessarily know what's appropriate, or where boundaries are to be drawn. Maybe it sounds like a loony leap, but I immediately wondered whether those teens--or others in the program--had been groping one another. Or if they'd groped my son. That would be my son whose default is to be cooperative and kind, and even when I know he's been miserable, to say that he had fun.

I can't give the staff a pass on this. I can't chalk it up to the chaos of dismissal. I don't send my child out of the house to a staff-monitored program for him to be in a place in which groping, kissing, fondling and the like go unnoticed, unremarked upon. This is just one more way to remind me that the only people who can or will ever protect my son are the people who know him best, and love and care about him most.

Maybe Noah is part of the flotsam and jetsam of disabled teen-dom, but he still deserves caring, concern, and protection. Maybe it's precisely because he's part of this motley crew of young adults that he deserves all that in greater doses and higher concentrations than do other youth.

That Telltale Smile

She asked for her mommy as she got on the lift. Her dad told her that mommy would meet them later. We rode up quietly together, just the four of us. I always love watching fathers with their daughters, especially when the interaction is so sweet and loving. I didn't notice, until she was getting off the lift, that this little girl has Down's Syndrome. I wanted to say something to her father, to tell him how touched I was to see him with his daughter. I knew it would come out the wrong way, so I said nothing.

As I watched father and daughter ski off, with dad holding his poles horizontally in front of him so his daughter could hold onto and be guided by them, I just thought that we've got it so wrong. We follow the burps and tweets of every version of idiot on the planet, but we too often fail to notice the true giants among us, the everyday heros. Here was a parent not outsourcing his job, not abandoning ship, not making excuses. Here was a dad having a day out with his daughter, just the two of them skiing.

Of course I've no idea what the back story is here. Maybe there's something not so heroic in this family's history. If so, that would just make them like the rest of us. But parents like him deserve a shout-out. Yes, I've got a horse in this race, but it's just true that it's harder to be the parent of a special needs child. And hell, it's harder to be the siblings, too.

I know more heros than I ever thought I would, people whose generosity and tenacity in just getting through another day leaves me in awe of them. There are Elizabeth, Diane and Jane, all raising kids with personalities rocked be emotional instability. There's Laurie, who smiles through the toughest days, and whose stories about sun-up runs to the donut shop always make me laugh.

There are the people whose names I don't know, like the mom who walked behind her son as he wheeled himself into the adaptive center for his day on the slopes. There was Taylor, a local boy who slurred his words and told my son, "I remember you, NG." And then he invited us to watch him sing in his school musical.

I watch my own husband with our kids and I think: "Never was born--or will be born--a man who gives more of himself to his kids." On his worst day, he's a better man and father than most.

That father and daughter on that ski run reminded me of how all the therapy, expertise and advice in the world can't begin to stack up against the only thing that ever matters to kids, and ever will. A parent's unconditional love and acceptance.