Six Months...

Six months ago tomorrow, I started this blog. October 21, 2011. It was a week, maybe two, after Benjy entered an inpatient psychiatric unit, because his hankering for death had become so strong I no longer felt I could keep him safe on my own. That was a dark, dark time.

Benjy has flirted with suicide, off and on, for a long time. He has had periods, brief and extended, of dysregulation so severe they have thrown our entire household into despair. His disability has challenged my parenting abilities, disrupted my equanimity -- what little I had -- again and again. How do you parent a child who is so frightened of vomiting he literally shakes every time he gets a stomach ache? Who is convinced the word will end, very soon, and we will all be plunged into icy darkness? Who believes said world is filled with miscreants and evil-doers, and that none of us are safe -- no matter how many times you tell him about the doctors and teachers and social workers, and so on, who strive every day to make our world better?

How do you parent a child who does not smile, or laugh, for months on end? Whose despair curls him up in a fetal position on his bed, when he ought to be out riding his bike or shooting hoops? Who cries out in his agony of loneliness, I'm lonely! Help me to not be lonely! and you know there are no kids who would want to be with him, so you can't help him?

Readers, it's hard. It's a heart-rending business, this Asperger's-anxiety-depression-suicidality. Parenting Benjy -- if it all works out -- will be my great work, my magnum opus, the one real achievement in my life. Sure, I've completed a PhD, published in some good places. But those pale in comparison to guiding Ben through life and keeping him safe. I think I've done a decent job of it so far -- and I know my limits, will call in the reinforcements when I need to -- and I hope that will continue.

But here's the beautiful thing: our lives, Ben's and Lars's and Saskia's and mine, have gotten so much better! Maybe it's being on the right meds. I know FOR SURE that being at the right school helps a lot. And finding -- finally! -- some good friends, not many but a few, which is enough. These things have bred optimism in my boy.   He smiles now, laughs, is sometimes silly. How happy that makes the rest of us!

A lot has happened in the six months since I started this blog. We hit rock bottom and began our ascent. I stopped working and opened my life up to a measure of peace. We got more information about Saskia's illness -- not enough, but more -- and she had her ups and downs. Wow. What's in store for the next six months?

I don't know, but I've got some stuff to look forward to. I've got a whole bunch of essays and stories out on submission; I suspect there will be good news and bad on those. We have Saskia's voice recital coming up, and I love hearing her sing -- she's a lyric soprano, has a gorgeous classical voice. If she becomes an opera singer someday, which is what she thinks she would like, I will not be remotely surprised. That kid has talent! Things will continue to go swimmingly between Lars and me, of that I am sure. More late-night walks with the Hellacious Hound to look forward to -- I love those!

And then there's Ben. I hope he will continue to get stronger and happier, and fill our lives with his own special radiance. And lots of arcane knowledge, which is his specialty.

Readers, what's changed for you in the past six months, and what are your coming delights?

Anxiety -- Mine, not Benjy's

Today, I'm anxious. About both my kids.

Tomorrow Saskia and I go to the rheumatologist. I am hoping, after a year or more of observation, we will be closer to knowing if she has an autoimmune disease. Not because I want that for her -- God no -- but because knowing is better than waiting to know. At least then you can move forward. So poor Saskia will have to deal with the indignity of being examined by a rather handsome (and old -- my God he must be FORTY!!!!!!!) male doctor, who does not appear to be gay, as does her hematologist. (Gayness makes examinations a bit easier if they include disrobing.) Then there'll be lots of blood drawn, which she hates, and then we will wait a few weeks to see if her numbers have gone up or stayed still.

Probably we will be no better informed tomorrow than we are today.

I wish Saskia were all I had to worry about. But now I am concerned about the intentions of our school district. They seem to have something up their metaphorical sleeve, and I don't like it. First there was the IEP (received around 2 months after our meeting!) with errors (or, "errors," as the case may be) on the placement page. These errors could mean the difference between Ben staying where he is, at the Joy School, and being shunted off to another placement (a collaborative or in-district will be over my dead body, so if a couple months go by and you don't hear from me you'll know why).

Then, an email today from an administrator asking for a meeting about placement -- just her and me, it sounds like -- which raises a red flag in my mind. No meetings will happen without our advocate, the divine Laurel C., and Lars by my side -- and ideally, the rest of the team.

Wondering what the heck is going on with these people, what they intend for Benjy, is FREAKING ME OUT. Because, for the first time since he started school at age three, Benjy is relaxed, happy, and learning. The other day I picked him up and he was glowing, just glowing. He piled into the car and said, "I'm happy, Mom! I love my school."

Just thinking of it makes me cry. If that Chinese woman whose piece about being The Tiger Mom I read in the Wall Street Journal thinks she's tough, just wait until someone tries messing with my boy. I will be AS TOUGH AS A WOLVERINE. I mean it.

Meantime I am supposed to be writing -- I have a self-imposed deadline because a mag is waiting for a piece from me -- and all I can do it stare at the fish tank. (Ick. It needs to be cleaned.) I am anxious, and I am distracted. Maybe I've stepped into Benjy's life. (Not for the first time -- I know where his issues come from.)

Well, tomorrow is rheumatology day. Maybe by tomorrow night well be a few steps closer to clarity, and I'll be able to relax a little.

They're Back

They're back. Anxiety and depression. With the short, cold, and dark days they always come. We had been so hopeful those days were over. Naive? Sure. But we wanted to believe that better times were here.

These days, more often than not, Ben cannot leave his bed and face the world without cajoles, promises, assiduous offers of help. These days even the Joy School is a scary place, albeit one he still professes to love.

Benjy is a mass of contradictions. Some of you, Readers, have your own experience with contradictory kids. Kids who are one way on Wednesday morning and completely different people by Wednesday afternoon. Whom you are sure love chicken noodle soup -- they did last night -- but actually hate it and cannot get it down without gagging. Who love school hate school love school. Who have a friend, who are friendless.

It's dizzying, keeping it all straight. It's hard as hell to figure out parenting a child who is a moving target. Sure, all kids are variable, all of them grow and change -- and forget about teenagers. Saskia is a storm cloud in the morning and sheer sunlight in the afternoon. But kids like Benjy can't settle into themselves, can't rest. They are always roiling, always in (sometimes painful) flux. It must be HARD being Benjy. And in many ways, although I love him beyond comprehension, it is hard to be his mother. I want to help him. To cure his pain. make life easier for him. And those are things I cannot do.

I can love him and be there for him. Get him his meds, and make sure they are the right ones. I can take him to therapy and his psychiatrist, try to help him maintain his few friendships. Look ceaselessly for opportunities for him. Things he can do and be successful at. Things he can do and enjoy. There are not a whole lot of those, but I keep trying.

So now he's off to school. Lars took him -- late, because he was struggling, and needed to sit under his SAD light for a while -- and I'm just waiting for the call I know is coming. They won't make me pick him up
unless he is deeply dysregulated and has to get out of there, but they'll call me to let me know he's fragile and falling apart. And then my day will be about him. Worrying and thinking desperately about how I can make things change.

Sometimes I think true maturity is accepting that there are things you do not have the power to change, and maintaining your equanimity in the face of that. I'm trying, Readers, I'm trying.

Professor Ben Gets Sick At School (And Teaches Me a Thing Or Two)

Today's school pick-up was like every other day's pick-up: a learning experience. I learned about wood ducks, beavers, cockatoos and crows.  Sometimes I learn about dinosaurs, early humans, evolution, and video games. It's actually pretty cool.

But today there was something I would have liked to learn about but did not. While I was waiting for Benjy to come out to the car his teacher told me he'd been feeling sick at school.

"Mental or physical?" I asked, although at times it is hard to recognize the difference, as Ben often perceives psychiatric distress as somatic.

"Well, the nurse checked him out and physically, all was okay."

As expected.

Now, yesterday was a non-starter for Benjy -- he never made it to school. Anxiety and depression are creeping back -- not dramatically but a little bit. So this "illness" had me worried.

When he got in the car I asked him about it in a circumspect way.

"How was your day?"

"Good. The usual."

"Did you eat lunch?" This, Readers, is something I genuinely want to know, as he is eating less and less these days.

"Uh huh. Salad."

"What did you learn?"

"Did you know a family of beavers has been recorded as having cut down a 3-foot wide tree?"

"No, really? And I heard you were sick today." I slipped that in casually.

"Yeah. I got over it, though."

"What was it?"

I felt weird. And my hands were shaking."

"Was it anxiety?"

"Mom! Please. Do. Not. Ask. Meaboutmyselfanymore!"

End of conversation. I still don't know what went on today, or whether I'll get him back to school on Monday.

But I can only take things one day at a time (I should have that tatooed on my forehead. One Day At a Time.) Right now things are pretty good. He's showing Danny, his Therapeutic Mentor, some stuff on the computer. And I hope he's asking Danny about his college anthropology classes, like I asked him to.

Sometimes Ben forgets that other people have something to teach, too. Danny's a smart guy.

Anxiety -- again

Anxiety has crept back into our lives. We see it in a tense posture, a strained, absent face. It manifests in hand-wringing. In restlessness. Lip-biting and finger-picking. And in pleas to stay home from school.

The Joy School is still a joyful place. It's the only place I can see Ben being successful right now -- and it's the only school he can imagine himself in. That hasn't changed. But whether it's a chemical process or a circumstantial one, anxiety is slowly encroaching on us. I hope that depression and suicidal impulses are not trailing close behind.

It has been such a relief, these past couple of months, not to hear words like, "My life is worth nothing." Or, "Please help me kill myself." Or, "Life is too hard. I don't want to be here." I cannot begin to explain what it feels like to hear your child utter those words. If you are a parent you can probably imagine.

In a way I had forgotten what that feels like. How quickly humans are programmed to forget pain! If we weren't no one would have more than one child. Our bodies -- or our brains -- are  kind that way. They allow  us rest and reprieve.

Well. What can we do but continue moving forward and hope it will be okay? We are not in crisis yet. Not even close. Overall things are still good. And Benjy is only somewhat dysregulated.

This morning I took care of Saskia and Ben and saw them on their way. And now I am going to take care of myself, starting with a cup of coffee with CREAM. I'm going to live it up, baby!

And Now, From the "You're Going To Eat Your Words" Dept., This Just In

You know how I wrote something like "things are going great around here" in my last post? Well, they were.

But twenty minutes after I posted those words, Benjy broke down. It was over boredom. For Ben, boredom is a catastrophe of the highest degree. When he is bored he is empty. And there is nothing in life that will fill him.

"I have nothing in my life but video games," he told me bitterly, "and I'm bored."

"Well, what about those other things I always suggest you do?"

His face was a mask. Finally he mumbled, "What are they?"

"Drawing. Origami. Making the dinosaur plaster cast you got for Hanukkah. Setting up your Mp3 player/camera-binoculars/computer microscope so you can use them first thing tomorrow morning. Working on your java programming. Watching a movie."

He was unmoved. "I am so empty!" he cried, thrashing about on his bed, smacking the wall with a hand, which I feared might be followed by head banging.

"Why don't we make a plan for tomorrow," I said, grasping wildly.

"I'm not four years old!"

I tried to stroke his back but he wrenched his body away from me. He was tight and tense, his face wet and contorted.

Readers, I did not know what to do for him. I have been doing this for at least seven years, and sometimes I am still flummoxed. So I called in Lars. And then I went and got an Ativan.

When I came back, Benjy was lying prone in a depressed silence. Lars lay next to him, his arm around him.

When I asked him to sit up and take his med he sat obediently and took it. Then he laid back down and tried to sleep. I checked on him five minutes later and he murmured some soft thing -- goodnight, or I love you -- and sighed.

He slept through the night and so did I. It's morning, now, and he is still asleep. It's a new day, likely to bring new things. I hope it's going to be a good one.

Love and Asperger's Syndrome

There was an article in yesterday's New York Times about love and autism. You can read it here.

This article got me thinking: What does Benjy's future hold, in terms of love and relationships? The young lovers profiled in the article, who are college-age kids, are at once interlocking gears, running interdependently and in sync, and completely dysfunctional. They have similar quirks and a measure of understanding for each other, yet neither can fully give the other what s/he wants.

For example, Kirsten wants physical affection but Jack can't give it to her (remember Temple Grandin's hug machine? I posted a pic in an earlier blog) -- and neither of them can really talk about it. So there are tears and hard feelings, and maybe some feelings of being lost and alone. But ultimately they want to be together. He discourses about chemistry and she actually listens. They are about as close to a match made in heaven as two people on the spectrum can be.

I hope against hope that Ben will find that someone who really listens when he dissertates about his subject du jour. He deserves to find that person, and she (or he?? who knows?) deserves to find Ben.

I am not always that listening person. I am often guilty of tuning out, nodding and saying, uh huh, but not really HEARING him.

When we had some setbacks recently, and Benjy was up half of one night, I failed to be a listener. He told me he thought a bath would help him regulate. It was 3 a.m. and I groaned inwardly: were we headed back to the all-night bath fests, with him fretting away in the tub and me dozing on the closed toilet -- five times, six times, until neither of us could take it any more and sleep claimed us? But I drew him a bath.

He settled into the tub and glanced at my face.

"About the allosaurus," he began, preparing to launch into a discourse on the Jurassic -- or Triassic, or Eocene -- period (I have forgotten which, and Ben is not nearby to set me right) but I put out my hand in a talk-to-the-hand gesture and said, "Stop."

"Benjy," I said, "I can't talk about dinosaurs right now. I have to just sit quietly and close my eyes."

His face fell, but he said, "It's okay. I know you're tired. You can  go to bed now, Mom."

I didn't want to leave him there, but I was going to slip off the toilet if I wasn't careful. So reluctantly I got up and went to bed.

Lars woke up when I pulled the comforter over me. "How is he?"

"I don't know. Can a person fall asleep in the tub and drown?"

"Why did you leave him like that?"

"I'm always the one who gets up. Why don't YOU stay with him?"

"I have to get up so early..."

I lay there, tense, worrying that my boy might drown but too tired to get up. After a while Lars heaved himself out of bed, and when he came back five minutes later, he told me Benjy had gone to his own bed, and was asleep.

I know I don't win this year's Mother of the Year Award. Because this year, like every other year so far, there've been times it's been too much for me, and I have been defeated.

So let's hope there's a soul mate out there who's going to listen when Benjy can't sleep, who's going to sit up with him and maybe bring him a glass of wine and settle in to learn something interesting about the allosaurus.

Anxiety or Illness?

It's a beautiful day today, clear and bright. But for Benjy this day contains some darkness.

He's not at school. When I woke him at seven he complained of a severe cough. And he is coughing quite a bit. But with Ben you never know whether a somatic complaint is actually a psychiatric one. So here I am, analyzing my boy, searching for clues. Is he hot? His forehead feels cool. Is he listless? A little, when I ask him to try to rouse himself and go to school.

The reason it's concerning to me is that we've had a few setbacks of late. Nothing extreme. I have not seen any shredded fingertips or bloodstained clothes. His lower lip is scabby and a little swollen but it has been, consistently, for the past six months. But there have been a  few nights and mornings when he's pleaded with me to let him stay home from school. And recently there was a sleepless night, complete with a 3 a.m. bath to relax him, that brought back uncomfortable memories. ( The worst of these memories is from a time that preceded his first hospitalization -- a weekend of sleeplessness and agitation, five or six useless baths throughout the long, dark nights, and Lars and I as despairing as Benjy himself).

So I wonder what's going on. Ben tells me he's opted out of two field trips recently, one to a bank and the other to a library. I have a theory about these opt-outs. I think he is anxious about the unpredictable behaviors of his classmates, and how those might play out in public. He has never dealt well with unpredictability or disruptiveness in other children -- these things stress him out. And right now there is a boy in his class who struggles with containing his emotions, is aggressive and volatile -- sometimes toward Ben. So today's somatic complaint may be a protest against the unpredictable and the disruptive at school. I just can't know for sure because that is not something Benjy would fess up to.

So here we are at home, and all I can do is keep him off the computer for as long as possible and tell him if he's too sick for school he's too sick for fencing tonight. And keep my fingers crossed we're not in for another storm.

The Old Story

Sometimes when you think things are going great, you get a nasty surprise. For a few weeks now, Benjy has seemed happy, especially with school. He's been lively and engaged. He's been learning. (Tonight he informed us and the dear friends we were eating with of the causes of the French and Indian War, which the rest of us over-educated folks sitting around the dinner table had forgotten.) There's been a fair amount of humming and singing going on around here. Hes' been eating-- real food, that is -- which is a relatively new and welcome development.

So imagine my surprise and dismay when tonight at bedtime he thrashed about in his bed and begged me not to send him to school tomorrow.

"But you love school," I reminded him.

"But I can't go tomorrow."

"You have to."

"It's not FAIR, Mom! There should be more days off than there are school days. It's not right!" His body was so agitated, and his mind, too, that he almost wrenched himself off the bed.

I stroked his damp hair. "Go to sleep and we'll see how you feel in the morning." This is the oldest trick in the book. Tell him you'll think about it when you really have no intention of letting him stay home. He sighed bitterly. I kissed him goodnight and went across the hall to read email. And after a few tense moments I heard him weeping.

I sat there, not knowing what I would do, until he called me. Then I went to him.

"Can you lie with me?"

"Sure, honey," I said. I lay down beside him and his rigid body relaxed. His warmth was somehow consoling.  His arm, which he'd draped over my waist, slipped off. And as is always the case when I lie in his bed -- a rare occurrence these days, and rightly so -- we both fell asleep. That was an hour ago. I'm up again, and I'm thinking. Ben is such a vulnerable boy. He probably always will be. Probably every time I think we've turned a corner we'll slide back a little. Two steps forward, one step back. But that's okay. I've given up on that trajectory you dream about when you're twenty-six, or thirty-two, or even nineteen, and you start dreaming about babies. And you know what? Heart-ache be damned, I'll take what I've got.

He's sleeping peacefully now, and I will be sleeping soon. And we will see what tomorrow brings.