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.