Milestones and Medication

Veteran's Day is the birthday of my eldest.  This is the first Veteran's Day when he will be a year older and also a newly minted member of the U.S. military.  The double meaning of the day from this point forward is something I won't need reminding to hold onto.

In the next few weeks, my other kids will celebrate birthdays as well.  We don't make a big deal of birthdays (much to my event-planning daughter's chagrin).  And my eldest is nearly militant about not celebrating his birthday.  So he's getting some belated food deliveries that hopefully will be nice surprises.  Some pastrami with all the fixings, and a few days later, his favorite cookies, from a bakery I go a little crazy in, whenever I get there.

My autistic son will celebrate his birthday at his culinary work site, which is pretty great since one of the teachers offered to bake him a cake, and he'll have peers to celebrate with for a change, instead of just family.  Last but surely not least is my daughter's big day.  She's basically given up on trusting us to get her a gift she'll actually like, so she recently sent me photos of about twenty different things she'd be happy to get as gifts.  It's actually a relief to be told what to get her, rather than deal with her disappointment if we choose badly.

This is all the mundane stuff of family life, which is kind of great when family life has had so many stressors for so long.  Just this weekend, my mom underwent surgery after falling down a flight of stairs and breaking her hip.  We're hoping she'll get back to being fully mobile after some time in rehab.  It's been slow going so far in the hospital.

And just last night, we were out with newish friends, a couple whose son has experienced challenges not dissimilar to those one of our kids has been wrestling with.  It's a funny kind of bond in an adult relationship, when you connect over the shared struggles of your kids.  It's comforting, more than anything.  It's also humbling.  Then again today, out for a short walk with my autistic son, I ran into another friend.  She'd essentially fled her apartment because her kids were making her crazy.  She showed me the expletive-laden texts from her teenage daughter, just to prove the point.  I said, "Come on over.  I've got coffee, cookies, wine, whatever you might want."  She stopped over for a few minutes, but said that she really wanted to go for a walk.  So I joined her.

Lots of conversation about her daughter's insistence on having access to certain medications after diagnosing herself over the Internet...of course.  We talked about how her husband goes one way with her daughter on these issues, while she goes another.  And I just shared my mantra that if, as parents, you're not pulling together, in the same direction, you'll wind up pulling apart.  I told her that I thought her daughter wanted to see a certain doctor who'd been pretty freewheeling with meds because she wanted a candyman, rather than someone who would obligate her to do the hard therapeutic/behavioral work in tandem with any needed medication.  And I told her that as parents, it's our job to help our kids make the best choices for themselves, rather than indulge whatever pops into their underdeveloped teenage brains.  Since their daughter is not yet eighteen, it's even more imperative that her parents continue to help chart the course.  And since they're also paying for whatever treatment she accesses, I also think they get to have a pretty strong say.  That's not blackmail; it's just reality.  I don't think as parents that we're in any way obligated to enable our kids to make irresponsible or even self-destructive decisions.  It's excruciating to have kids in pain, kids who are struggling.  But none of that means ceding to kids control over medication and other decisions they don't have full grasp of and cannot take full responsibility for.  

I know in my husband's and my parenting journey, we've done our best to make sure that our kids are engaged in whatever decisions we've had to make.  But we have one child who has been unable for most of his life to make consequential decisions---including about his health--so we've had no choice but to make them for him.  We've also made choices for our other kids, sometimes on their behalf, but as often as we could, in consultation with them.  Life doesn't always line up neatly, allowing for deliberative choice-making, with lots of engagement and back and forth. Sometimes, you just need to get shit done.  And sometimes in a hurry, during a crisis, under the time gun, whatever.  

Parenting can be brutally hard.  And loaded with some not very good options.  But that doesn't mean you can punt on choosing.  And when it's not brutally hard, it can even be more difficult than that.   But we have to keep trying.  And coming back to the love that animates all of our choices.  Even if our kids hate us for making them.

Is There an Upside to Being Seen?

It seems that I've become that person, the mother others notice.  And react to.  Just the other day, as I was staring at what I think were the booster engines on the Saturn V rocket, a woman approached me and said, "Are you ok?"  I was actually startled by her question, since I didn't immediately know why she was asking.  "I have a son who's autistic.  I see it in your child."  I don't actually recall responding because, after all, what would I say?  "Keep smiling," she added, and walked away.

I'm not exactly sure how I felt about that encounter.  Well, that's not entirely true.  I think it hurt my heart.  Not because what the woman said was unkind or uncalled for.  I knew she was reaching out with kindness, with empathy.  And I will always, always, be grateful for folks like that.  It's just that other people seeing you struggle, seeing your child struggle, is something that just hurts.  It's not that I'm embarrassed about it, since I make a point in those moments of not seeing other people who might be seeing me.  It's just that it brings the most intimate of family struggles out into the open in a way that is like wearing a wound, like bleeding profusely as you go through what otherwise look to the outside world to be the normal activities of family life.  But of course there's nothing normal about any of this.

And just a day after the Saturn encounter, I found myself explaining to a lovely, well-meaning flight attendant that my child is not rude or disrespectful.  My child was in fact stuck in an obsessive loop that didn't seem to have an exit ramp.  Clearly, the flight attendant saw something in my eyes, on my face, that led her to offer to intervene.  That would not have made anything better, so I demurred.

After the plane took off, I went back to the galley to explain to her why my child was behaving that way.  Which led her to reveal her own struggles, with anxiety.  That led to some quite wonderful conversations during the flight, including our sharing photos of our rescue dogs (hers and one of ours look exactly alike!), and my learning that her dog Charlie is the only one who can get her 88 year old mother with dementia to take a shower.  Charlie visits her mom and by licking her mom's leg, somehow effects the transition to showering.  I also learned that her mom still smokes, that she and her husband try to keep her mom safe, and that she still buys her mom cigarettes.

This is the same flight attendant who took it upon herself to move us to two empty rows in the plane before takeoff.  She did this while I was in the restroom and when I came out and saw that we'd been moved up, I asked my husband why.  He told me that she'd said to him, "Your wife's a doll."  Well that was completely lovely and totally unexpected.  But I also think it was one woman who understands pain and struggle reaching out to another.  And that was kind of perfect.  And wonderful.  And heartbreaking.  And gratitude-inducing.  And a reminder that sometimes, being seen can be a very good thing indeed...

Of Supers, Smiles and Siblings

I was leaving my building on a recent morning and our super said to me, "I love how you're always smiling and happy."  "Oh Frank," I said, "you aren't accounting for my acting skills, for the times I'm just faking it."  I've never been one to lie (which is a hazard, in life/work/relationships, and perhaps the subject of a future blog entry), but I also don't believe in walking around with a woe is me affect, since I don't really see the upside of being a downer to other people, especially those who aren't able to help, or can't really understand my experience(s).  So I'm left with doing my happy face routine, and truth be told, there is power in faking happy, in just smiling, even when you're feeling something different.  Because maybe that smile will translate into actually feeling something different.

And life is full of surprises, some quite wonderful.  There is this, for example:  the ways in which my autistic son is lately trying to figure out how to be helpful to another of his siblings, who is struggling.  He often asks us how he can help, and why that sibling feels a particular way--e.g., sad, anxious, angry.  It is quite miraculous really, and even a bit funny to realize that the child so long on the receiving end of help, is now the one reaching out to offer help.  It is a beautiful testament to all we don't know and cannot anticipate as parents.  Perhaps it validates my commitment to not reading parenting books, since there is none in which a chapter documenting this kind of shift would appear, and would anticipate or speak to my experience.  Because it's entirely possible that this flowering of my son's awareness, of his budding empathy for his sibling, never would have materialized.  So to have looked forward to it, because some parenting "expert" said it would happen, and to have it not happen, would have been twice devastating.

So instead, I try to be open to the vagaries and mysteries of parenting, as exhausting and sometimes deflating as they might be.  Because sometimes, what prompts me to "fake it" mutates into something that makes my smile the very thing a casual observer--or a building super--might take it to be:  a sign of contentment, of joy, perhaps even of outright happiness.

Parenting from the Front Lines

Out to dinner last night with friends we hadn't seen in far too long, it became abundantly clear that parenting for our foursome has not been a cakewalk.  My husband's and my journey has been objectively more fraught, but each of us carried the weight of the various challenges our children have, and of how we have handled--or perhaps even mishandled--them.

I was struck as well by the things I pointedly don't envy, in this case the child studying computer science at the premier institution on the West Coast, a place apparently so consumed with rivalry that in order to get into a dorm of one's choice, an essay explaining why it's the best fit for you is required.  Honestly, that would have me ripping out my hair.  And thinking that no snazzy degree is worth that kind of stupidity.  But I digress...

Peppered with questions by my friend about a choice we're thinking to embark on vis a vis one of our kids, I was struck by how I've married the questions I've asked of the program's intake coordinator with a heaping dose of faith and hope.  In other words, there are questions I haven't asked, and some I'm not sure I want to ask, because if the answers aren't bullseye satisfactory, then what?  Do we walk away from this option?  Do we continue to search, hoping to find the thing that I know for sure doesn't exist, viz., a program that meets all of the criteria I might hope for, perfectly, with guaranteed outcomes, a non-bankrupting fee structure, lifetime support and follow up, etc. etc?

It's funny being a parent of a certain age and looking around and realizing how the truly hard work of parenting is maybe only just beginning.  A friend of long ago once shared wisdom some of her older friends had shared with her:  bigger kids, bigger issues.  Maybe when your kids are young you fret over sleeping habits, toileting, and the like.  As you get older, you worry about sex, drugs, driving a car, and all the many dangers that confront kids as they get older and go farther out into the world.  You worry about hurts that won't heal just with a bandaid and a kiss from mom.  You worry about scars you cannot see, about the ways in which the complexity and cruelty of this world mark the children you love, perhaps for life.  And you try, try, try to find a way forward that remedies some of that, or even reverses it where possible.

I have zero confidence that my husband and I will do everything right.  Because we haven't up until now.  But we have done one thing above all right, and it became clear to me when, in the office of a new psychiatrist recently, we were asked in amazement if we'd really never been to couples therapy.  "No," we explained, "we haven't been."  "That's incredible," came the reply, "given all you've had to deal with."  "Maybe, but we've been well aware all these years that if we didn't pull together, we would surely pull apart."  And maybe, in the end, that's the one thing that matters most, that the two of us are trying out hardest to help our kids have the present and the future they want and deserve.  Maybe we'll help them get there, maybe we'll fail.  But it won't be because we didn't pour every ounce of love we have into trying.  And if that isn't enough, I'll be damned if I know what is.

Meeting My Son Again, for the First Time

There has been a whole lot of ink spilled about the ways in which raising an autistic child involves a process of grieving, of coming to grips with the "what might have been" of parenting.  It's an experience of burying some dreams and dealing instead with a new reality, one that not only might not have any typical parent dreams embedded in it, but one that might be suffused with new, unanticipated, and perhaps even indescribable sorrows.  So I won't focus on that.

My autistic son is soon to celebrate his 24th birthday.  I don't know that I consciously grieved for whatever version of a son I thought I'd lost.  But I do know that I'm totally tickled by the son that seems to have emerged in just the past few months.  Noah has always been funny, silly, quirky.  All of which, I am convinced, are signs of intelligence.  And I've always believed that he takes in and knows more than he can communicate back to us.  So what a wonderful revelation it's been to see Noah emerge from whatever state of lesser comprehension/communication he's been living in.  I have my theories about what might have sparked this change, but as for the change itself, it embodies things like his asking us this weekend, "Is Ariel anxious?"  And then offering, "I can help."  And also asking, "What is anxiety?"  Amazing what he's been hearing and paying attention to.  What he's been taking in and understanding.

I'm afraid to get too invested in these changes, lest they disappear.  But I will cherish this miraculous unfolding, this unfurling of my son's magical self, for however long we have it.  There is also a kind of calm that has accompanied this unfurling, along with more certitude about what he's willing to do or not do, eat or not eat.  He seems to be coming into his own, owning what it means to be Noah.  And it's pretty f**king amazing.

Even on our several hour drive home today, when I honked lightly at one car and he asked me if the driver was an asshole, I was thrilled.  Yes, he'd heard that one from my husband, who spends way too much time in his car, some of it with Noah riding shotgun, but it was matter-of-fact and contextually appropriate.  No, we don't encourage cursing, but our tongues slip now and again, and he's clearly been listening.

The young man I'm seeing and hearing from now isn't some new and improved Noah; he's the Noah who's always been there, but he's kind of revealing himself to us for the first time.  Or for the millionth.  My guess, my theory, is that the shift we made some months back in his anti-seizure meds has lifted some kind of cognitive cloud.  In fact, the change in meds was made when Noah's neurologist asked me almost in passing back in March if I'd seen any changes in him and I said that he'd recently had one of his can't-talk-him-off-the-ledge episodes, the kind that compel us to reach for what we--and Noah--call his emergency pills.   The doctor then proceeds to tell me that the anti-seizure meds Noah had been on for several years--ever since his first seizure--can in fact cause behavioral outbursts.  Well heck, good to know that several years into giving them to him every damn day.

Since we've tapered those meds, not only have we not seen an outburst; we've seen it's opposite.  I would describe it as a kind of maturation, combined with greater awareness, understanding, communication, engagement, and self-regulation.  It's a wonderful cocktail of stuff that is exposing us to a son I feel like we're meeting for the first time.  It's a bit like giving birth to an almost 24 year old newborn, full of all the possibility and promise of parenting.

I don't know how much (more) of this unfolding we'll get to see.  Is there a point at which the emergence of this "new Noah" will plateau?  Will the gears get stuck?  I just don't know.  But so much--if not almost everything--about raising Noah has been in the I just don't know category that it almost doesn't matter.  It's a gift to see this Noah emerge, and to get to know him.  And we'll love him not an ounce more or less than that other guy we've adored all these years...

Cockeyed Optimism

That little two-word summation, 'cockeyed optimism,' is pretty much the textbook definition of parenting.  Sure, there are people who procreate for religious or maybe even political reasons, but having children is ultimately an act of cockeyed optimism.  It's all about throwing hope out into the world, and hoping the fates don't spit back at you struggle and heartache.

Though we might be loathe to admit it, all parents have dreams for their kids.  Some are quite specific and directed, viz., I want my child to grow up to be a Harvard-trained neurosurgeon.  Others might seem more pedestrian, but are no less invested with hopefulness, as in, I want my child to be a good person, to be someone who fulfills his or her individual potential and finds a loving partner with whom to share life's journey.  (You  might guess that if I have had a parenting hope or wish, it looks way more like the latter than the former...)

But wishing, as the saying goes, won't make it so.  And because that's true,  parenting takes real work.   It's literally exhausting, from the pain/agony of childbirth, to the sleepless nights of breastfeeding, to the worries that evolve as your kids get older.  From bruises at the playground, to quiet hysteria about first car rides and other dangers, parenting is like some kind of crazy minefield you go through, hoping you don't step on anything that will mean catastrophe.

But it's also true that modern parenting--especially the American kind--teases you with one incredibly false hope, namely, that you can actually control outcomes through how you parent.   That might actually be the biggest load of horse manure sold in a country that probably sells more (parenting) horse manure than any other country on earth.  Go into any bookstore, and the number of parenting books is overwhelming.  From advice about nursing and sleeping all the way through to getting your kids into and through college, there are more advisors out there telling you what to do to "get it right" than you can shake a stick at.  And though I'm not one of those advisors, I'm going to add my two cents.  And here it is:  don't buy those stupid books.  They can't teach you anything you don't already know.

I do confess that in a moment of weakness, when my middle child was waking up every 1.5-2 hours during the night to nurse, and I was already back at work, the exhaustion was becoming unbearable.  We tried this sleep training method recommended by some Dr. Ferber.  It involved letting the baby cry for incrementally longer periods each night, as I recall.  After about two nights of letting my younger son cry while my older son tried to sleep, I told my husband that if Dr. Ferber wanted to come over and get the baby to sleep, he was welcome to, but I was taking him into our bed.  And that's what I did.  And guess what?  Eventually, he slept through the night.

I took our kids into our bed all the time (I think I might be attitudinally African, where family beds are a thing), and when the kids started coming in on their own, and wanting to stay, I prevailed upon my husband to get a bigger bed.  We've had a king-sized bed ever since.  And nothing makes me happier than having my young adult children pile into our bed to snuggle, to watch tv, to read with us.  The only difference is that now that everyone's bigger, there's less room for us parents.

I've gotten a whole lot of things "wrong" in my parenting, I'm sure.  But here's what I've gotten right: along with my husband, I've raised three unique, complicated, curious, loving kids.  They have among them a range of challenges, some much more manageable than others.  One of my kids will likely be dependent on us for life.  And he is an incredibly happy, loving young man in spite of that.  My eldest has told us how glad he is that we didn't live vicariously through him like so many of his friends' parents did.  My youngest has performed miracles, like getting a selectively mute camper she worked with one summer to speak.

Like any parent, I've had my days when I've wanted (literally) to strangle my kids.  Frankly, I don't trust any parent who claims never to have wanted to do the same.  But even in those infuriating moments, I try not to lose sight of what the excruciatingly hard work of parenting has enabled.  While that work is far from perfect--and I'm honestly getting kind of tired of how damn hard it still is--I hope my kids feel that our not taking someone else's advice about how to raise them has been worth it.  And if they don't feel that way well, I'm sure there's a book that can advise them about how to get over it...

Just a Day...

I was chatting with (or was it ranting to??) my dear friend Sara earlier this afternoon.  After I ran through the litany of my day, which had me wanting to fall through the floor, I asked her to laugh.  "Please laugh," I nearly pleaded.  "This day's been so steroidally ridiculous that it crosses over into hilarious.  So please laugh."  Being a dear friend, she obliged.

Then she offered me her take on the son making me nuts, the daughter driving me mad, and the other son, whose being out in the world gives some top flight jackasses not only the opportunity to stare at him, like he's some escapee from a prison for freaks, but literally to swivel their heads around and continue to stare as he passes by.  Twice today, on our walk to the hospital to have his head unwrapped from his 24-hour EEG, I turned around and told people, "STOP STARING.  IT'S RUDE."

And there it went.  A day that started in stress, with a call that pulled at my heart, banged on my head, and left me feeling afraid to feel hopeful.  That's a feeling I actually have with some regularity.  Because every time I think it will work out, that another shoe won't drop, it doesn't, and another shoe drops.  Every damn time.

So laughter, tonic for the depressed, the fearful, the stressed, the cornered, the desperate, the silly, was my go-to.  I need to make fun of the insane circumstances of even this one day because to take it too too seriously would be to deplete my reserves for the next round of crazy, for the next game of "Can you top this?"

There's still time left on the clock of this day, so I get to seek out some more laughter (tossed with a little coating of empathy, I hope) at dinner this evening with my sister. "I might cry.  Might want to make sure it's a dark place."  "No problem. You can cry.  And if the place I chose isn't dark enough, we can go someplace else."

That Tingling Feeling?

I had a recent text message exchange with my sister that included her saying "I'm sorry it hurt.  I was trying to be light and funny.  I missed terribly."  And my reply, "It's ok.  Everything hurts lately.  I know you meant it in a loving way.  Some days, I'm just all raw nerve endings.  Not a fun way to be, so I have to do better.  And please do share happy news; don't think I don't want to hear about that.  It's just that because we miss out on so much--or it always comes with abnormal stress and worry--that highlight reel stuff is kind of brutal."  Followed, of course, by an emoji of a blowing heart.

A couple of things strike me.  One is that in spite of the fact that my sister really did miss the mark, she owned it.  "I missed terribly."   That kind of taking responsibility for unintended hurt is moving and incredibly powerful.  It matters when someone is in pain that she can be seen and heard.  So deep gratitude to my sister for that.  And for the love that undergirds it.  The other thing that strikes me is the daily challenge not to let the struggles and sometime anguish of my parenting journey numb me to being able to take in and cherish the joyous moments in the lives of those I love.  Or even in my own life.

I've often said--and I know other parents of kids with extraordinary needs would agree--that unless you're walking this walk, you just don't get it.  You can't get it.  There is no intellectual exercise that will allow you to tap into my world, to access my experiences in any meaningful way.  You can't hand off anguish, bone-deep fear, or terror to people who haven't experienced it directly.  It's why victims of torture, of genocide, and of all manner of other atrocities in some ways never escape their suffering.  They might heal in important ways, but there will always be a gap--an emotional, experiential moat, of sorts--between them and everyone else who has not had that experience.  I can try to understand that kind of suffering, but I cannot get inside it.  I cannot feel it, know it, understand it from the inside out.  I can only be a sympathetic person on the outside, looking in.

There are things I will never say or write about regarding my parenting journey.   My children's deepest stories and struggles are not mine to tell.   Their experience resides within them, and though I bear the effects of their struggles (as they bear the effects of mine), what each of us experiences directly is not equal to what each of us experiences indirectly, in relation to one another.  The person pricked feels that pain differently from the person who tries to help the person in pain.  That's just a fact.  It doesn't mean that secondary suffering isn't real; it's just that it's a degree (or more) removed from direct suffering.  And when you move outside the protective bubble of a family, out into the world in which social expectations demand that you keep certain things under wraps, the distance grows, the silence deepens, the weight feels exponentially heavier.  You put on your game face and do what you have to do.  You walk through the world with a smile on.  You mouth words that outwardly demonstrate that you are fully engaged, connected to the normalcy around you.  Or you walk without seeing, refusing to notice the people staring at your child as if s/he's a freak, refusing to let their fear or disgust penetrate.  But of course that's a lie.  Because all those exposed nerve endings?  They're precisely what makes you hyper-sensitive to every look, to every turned head, to every sign that what is off kilter in your world is being seen.  And judged.  And so are you.

Split Brain/Split Screen

For many years, I kept journals.  Then I stopped.  And years after that, I went back and read some of the entries.  And I was reminded of why I stopped.  The sadness that welled up inside me as I re-read some of those entries was pretty hard to take.  It made me feel like my life was a kind of merry-go-round that I couldn't figure out how to get off of, how to move to another ride, how to change the rhythm, the outcomes.

Fast forward some years to my having kids.  I decided--given the spotty nature of my actual memory--to keep journals about my kids.  That way, I'd have some version of a reliable record of who they were, and who they'd grown up to be.  I kept that going for a really long time, until my eldest was eighteen years old, in fact.  Then I stopped.  I don't think there was a particular prompt for my stopping.  It was just a lot to keep toggling among three different journals, recording entries about three different kids and the ways in which their lives were both individuated and overlapping.

And truth be told, as certain things about my kids got harder and more complicated, I didn't want to put those things in writing.  I was like the mother in To The End of the Land, who believed that if she just wasn't home, the army representative couldn't knock on her door to tell her that her son had died in combat.  It was her way of protecting him, and of protecting herself.  I think I might have had a similar notion, viz., if I didn't write it down, then maybe that meant it didn't really happen.  The magical thinking associated with that is quite powerful.  Of course it does nothing to change outcomes in the real world, but we each need whatever we need to lean on to help us get through life's challenges.  And this was one pillar of coping, for me.

Today, emerging from the office of a medical practitioner who was describing what he thinks is happening with one of my kids, I realized how pillars can hold up a house, an edifice within which you construct a life, but they can also fall, leaving you exposed, wounded, or worse.  Yet later that same day, I was reminded of the whiplash experience that in many ways defines my parenting experience when one of my other kids called to ask when we'd like to come for his commissioning ceremony.  It's a kind of cognitive craziness that's hard to describe.  It's as if I'm living my own life with my heart and my head in different worlds, at the same time, all the time.  There's no holistic anything; there's just a kind of cacophonous chaos that ebbs and flows, and rises and drowns me.  And then recedes so I can breathe.  Until the next wave comes.  Even if I'm not home to answer the door.