Oh, I should have known it was too good to last. Even though the director of the school told us about that month-long "honeymoon" period, in which students love everything about their new lives, followed by a big dose of end-of--vacation blues, I thought we were in the clear.
I thought I could start worrying about myself, taking care of my own, increasingly significant needs. I thought I could try to relax. To sleep more and better. To exercise (as much as I could swallow -- unfortunately, exercise and I do not get along very well). I thought Benjy was all settled, with friends and activities and good food in his beautiful green-meadow-and-dry-stone-wall corner of New England.
I guess I thought wrong, once again.
The sad phone calls have returned. We'd only had two of those at the very beginning of his stay. Three at most. But they're back.
Fuck.
They always start out OK. With a forced optimism that makes me think (fool that I am!) that this time I've dodged the bullet. That he really is happy.
Benjy: Hi Mom!
Me: Hi Ben! How ARE you?
Ben (slightly flat in affect, but that is his usual mode): I'm good.
Me (all bouncy): What did you do today?
Ben: Uh, I played Mumbleply.
Me: I'm sorry, could you repeat that?
Ben: I played Monopoly. And mumblemumble with credit cards and you can mumble stuff.
(Benjy has developed a habit of rushed, slurred, and mumbled speech. I guess it's from all those pills he knocks back every day.)
Me: Wow, that sounds like FUN! A new version of Monopoly with credit cards? And did you play with your FRIENDS in your house?
Ben: Uh, I guess. Oh, and I have earned $20 in allowance. Tonight when we went to the store I spent half on a card game.
Me: Awesome! Good work! And you can play it with your FRIENDS?
Ben: Uh, yeah. Whatever.
Readers, I think you know where this is going.
Me: So, what else, Honey?
Ben (in a lowered voice): Look, can I just tell you something?
Me (heart sinking): Sure!
Ben: This place is not for me. I miss you,. I want to come home. No one will be friends with me here.
Me: Honey, I heard you've made a great connection with C.
Ben: C is leaving end of August. I want to be a day student. Can't you help me? Can't you get me out of here? I will go as a day student. I just miss you and want to be home.
And then, Readers, the tears fell. His tears and mine, although mine were, and must always be, secret. As hard as it is, I have to be strong.
I told Benjy that he cannot be a day student at a school that's an hour and a half from home. It just will not work. Of course he did not believe me. I am so afraid he thinks we don't want him with us. That we've thrown him away. Oh god, that thought is killing me.
I tried my best to remind him of his sadness and loneliness at home. Of how little there is to do, and how our lack of expendable income rules out most of the little there is. (Benjy is not a fan of free stuff, like strolls along the river, unless he can bring his fishing pole. But I don't feel qualified to supervise fishing.)
I tried to remind him about the revolving door into the hospital, how that is no life for a boy of 13.
It didn't work. He tried so hard not to cry but I suppose in the relative privacy of the porch of his house, with my familiar voice in his ear, he let himself go. It's what happens now.
I asked him to get the house mother on the phone. He said no at first, because he thought he would get in trouble for having a negative conversation. I promised him that would not happen.
"This was not negative," I told him. "You are feeling sad, and you shared your feelings. That is OK, and I will tell her so."
So he fetched the house mother and we talked about Ben. He is having trouble connecting with the other kids -- especially on weekends, because on weekends his house closes up and he goes to stay in another house, where the kids are less familiar and older.
This is one of the few things I don't like about the school. Most other kids in his house have been there long enough to have earned home privileges every other weekend. So with only one or two kids around, they close up Ben's house every weekend and consolidate with another. This would be hard for any kid, but for a kid with Aspergian social skills?
Argh!!
I can see I need to get to work on this. The next thing I do this morning will be to compose an email to Ben's therapist. Someone has to help him figure out this weekend stuff, fast. I don't know how many more sad phone calls I can take. And as I am trying to climb my way out of this well of pain and fatigue I now dwell in, I need to try to fix this fast. Because each time he asks me for help and I have to say no, I get a little sicker.
Today, at least, he's going to the beach. Sea-gods (or lake-gods, more likely), be kind to my boy! Let him have some joy and some fun. And maybe, if he does not find a friend today, he'll find some cool fish or crabs to observe. Ben has always loved poking around for those little constituents of the shallow waters.
Showing posts with label Loneliness. Show all posts
Showing posts with label Loneliness. Show all posts
Saturday, August 10, 2013
Thursday, October 4, 2012
This Lonely House
This house is so lonely without Benjy in it, I could cry. I woke up in the middle of the night to use the bathroom, and peeped into his dark, open bedroom. Because for a tiny moment I had forgotten he was gone.
His narrow bed with the white down comforter was empty.
I caught my breath and when my heart calmed I went back to bed. I woke Lars and told him I missed Benjy. "Me too," he said. "And the sad thing is I have so much work on my plate right now I probably cannot even visit him."
Because Benjy is back in the hospital, the same one I wrote about last October when this blog was born. He knew he was struggling beyond our ability to help him, beyond the collective abilities of all his outpatient mental health professionals, and he wanted to go. We left him last night at peace with his surroundings and himself.
It reminds me of the story of Mary Lamb, early 19th-century writer/intellectual and sister to the essayist Charles Lamb. I only know about Mary Lamb because in some college English class we read something by her brother, and the Norton or Oxford anthology offered a little blurb about them.
Apparently, Mary Lamb was intermittently "mad" (yes, the Norton or Oxford editors chose to use that word), and whenever she felt the madness coming on she would calmly and patiently ask for her strait jacket, and Charles would strap her up, and they'd walk to the nearby lunatic asylum. (Forgive me that -- it's what they called them in the 18th-19th centuries, and you'd be better off in prison. Really.)
I can't help thinking about Mary Lamb when I think of Benjy's understanding of his own needs, his willingness, and even sense of relief, when we told him we thought a hospital stay might be in order. He WANTED to go. (Except Mary Lamb stabbed her mother to death, so I hope the similarities end there! ;)
What Benjy said was: "I need to take a break from things. Life is too hard right now, so I need to step off it." He didn't mean permanently. What's wonderful and beautiful this time is that he is NOT suicidal. He is just completely non-functional, at school and at home. Deeply depressed. Withdrawn. sleep-dysregulated (sleeps all day at school, up all night at home). Unable to eat much. Ticcing so severely his body is never at rest.
For us, that may be the hardest part. Watching him tic relentlessly. Of all the things that make Benjy different, that one is the most public, the most obvious.
I know that one very well, thank you. It is a curse. There's chemical help for it, but at the very least it makes you fat. At the worst it makes you a cognitively blunted, fat zombie. It makes you walk and talk funny. It makes you need glasses, and to drink water every ten minutes because your mouth is dried out.
(HALDOL, I'M TALKING ABOUT YOU.)
I once swore I would NEVER, EVER make any child of mine take Haldol. The Soviets, according to my father, gave it to political dissidents to render them metaphorically impotent. So I was sure as hell not going to give it to any kid of mine.
Now, looking at my poor Benjy, I have to wonder what would be best. Because he's going to have to choose his evil. Would he rather be a weirdo due to the tics, which are exhausting to boot, or due to being a fat zombie (see above)? I'm afraid that may be a choice he has to make.
What is it about our family that we tend to be given shitty choices?
The Universe: OK, Anna, you can either have breasts and ovaries or I'll give you a fifteen percent chance of surviving into your forties. Quick, you don't have much time to decide!
Me: Uh, can I draw again?
Somehow, life doesn't want to reshuffle and give you anther hand. So you have to make dowith the one you got. Ben got the one that gave him Asperger's and Tourette's and OCD (I haven't even mentioned that DX yet) and mental illness. I got the one that gave me Tourette's and the breast cancer gene. Poor Saskia got the one that gave her what appears ever more convincingly to be lupus. (Did I mention that the day before yesterday her painful knees, thought by her rheumatologist to be runner's knee and not the arthritis caused by Lupus, because her knees were not hot and swollen, have now become hot and swollen? Troubles come in groups around here.
All I can say is, thank god Lars is completely normal. Except he's barking mad in his own, endearing ways.
Anyway, I am bracing myself for a lonely day, with no Ben to pick up at two-thirty (or hang out here with, as the case might have been) and Saskia out at a volleyball game until 7:30 or 8, and Lars no doubt working late.
Thank goodness for the Hellacious Hound, that's all I can say.
His narrow bed with the white down comforter was empty.
I caught my breath and when my heart calmed I went back to bed. I woke Lars and told him I missed Benjy. "Me too," he said. "And the sad thing is I have so much work on my plate right now I probably cannot even visit him."
Because Benjy is back in the hospital, the same one I wrote about last October when this blog was born. He knew he was struggling beyond our ability to help him, beyond the collective abilities of all his outpatient mental health professionals, and he wanted to go. We left him last night at peace with his surroundings and himself.
It reminds me of the story of Mary Lamb, early 19th-century writer/intellectual and sister to the essayist Charles Lamb. I only know about Mary Lamb because in some college English class we read something by her brother, and the Norton or Oxford anthology offered a little blurb about them.
Apparently, Mary Lamb was intermittently "mad" (yes, the Norton or Oxford editors chose to use that word), and whenever she felt the madness coming on she would calmly and patiently ask for her strait jacket, and Charles would strap her up, and they'd walk to the nearby lunatic asylum. (Forgive me that -- it's what they called them in the 18th-19th centuries, and you'd be better off in prison. Really.)
I can't help thinking about Mary Lamb when I think of Benjy's understanding of his own needs, his willingness, and even sense of relief, when we told him we thought a hospital stay might be in order. He WANTED to go. (Except Mary Lamb stabbed her mother to death, so I hope the similarities end there! ;)
What Benjy said was: "I need to take a break from things. Life is too hard right now, so I need to step off it." He didn't mean permanently. What's wonderful and beautiful this time is that he is NOT suicidal. He is just completely non-functional, at school and at home. Deeply depressed. Withdrawn. sleep-dysregulated (sleeps all day at school, up all night at home). Unable to eat much. Ticcing so severely his body is never at rest.
For us, that may be the hardest part. Watching him tic relentlessly. Of all the things that make Benjy different, that one is the most public, the most obvious.
I know that one very well, thank you. It is a curse. There's chemical help for it, but at the very least it makes you fat. At the worst it makes you a cognitively blunted, fat zombie. It makes you walk and talk funny. It makes you need glasses, and to drink water every ten minutes because your mouth is dried out.
(HALDOL, I'M TALKING ABOUT YOU.)
I once swore I would NEVER, EVER make any child of mine take Haldol. The Soviets, according to my father, gave it to political dissidents to render them metaphorically impotent. So I was sure as hell not going to give it to any kid of mine.
Now, looking at my poor Benjy, I have to wonder what would be best. Because he's going to have to choose his evil. Would he rather be a weirdo due to the tics, which are exhausting to boot, or due to being a fat zombie (see above)? I'm afraid that may be a choice he has to make.
What is it about our family that we tend to be given shitty choices?
The Universe: OK, Anna, you can either have breasts and ovaries or I'll give you a fifteen percent chance of surviving into your forties. Quick, you don't have much time to decide!
Me: Uh, can I draw again?
Somehow, life doesn't want to reshuffle and give you anther hand. So you have to make dowith the one you got. Ben got the one that gave him Asperger's and Tourette's and OCD (I haven't even mentioned that DX yet) and mental illness. I got the one that gave me Tourette's and the breast cancer gene. Poor Saskia got the one that gave her what appears ever more convincingly to be lupus. (Did I mention that the day before yesterday her painful knees, thought by her rheumatologist to be runner's knee and not the arthritis caused by Lupus, because her knees were not hot and swollen, have now become hot and swollen? Troubles come in groups around here.
All I can say is, thank god Lars is completely normal. Except he's barking mad in his own, endearing ways.
Anyway, I am bracing myself for a lonely day, with no Ben to pick up at two-thirty (or hang out here with, as the case might have been) and Saskia out at a volleyball game until 7:30 or 8, and Lars no doubt working late.
Thank goodness for the Hellacious Hound, that's all I can say.
Thursday, October 27, 2011
Loneliness
There's been some talk about loneliness on this blog, particularly in connection with disability. And I was thinking about my own loneliness, and that of my son, as I drove to and from work this morning.
I am quite well acquainted with Loneliness, thank you, and I do not like Her. My loneliest interlude was during my first marriage. Five years of it. You see, I was passionate about certain things, and J-- was not. Nor was he a good pretend enthusiast about my special things. So, when we went to the opera (and yes, he does get credit for going) he mainly joked about getting a pair of glasses with fake eyes painted on the lenses, so he could sleep without any of those (evidently stupid) opera people noticing. He never actually listened to, or watched, or -- God forbid -- tried to appreciate, the musical/theatrical/visual spectacle unfolding before his eyes. Even when it was Mozart, whose operas are simply NOT SLEEP INDUCING.
Then there was the time I felt an urgent need to read him Oscar Wilde's story "The Selfish Giant." (Go read this IMMEDIATELY if you haven't already, and when you cry, tell yourself it's a completely reasonable thing to do. I will be there with you in spirit, happily sobbing.) I was reading away, all choked up, and picked up J-- in my peripheral vision. What he was doing did not inspire feelings of joy in me. He was glancing at his watch and stifling a sigh. He just did not get it.
Not connecting with your significant other makes you lonely. So can parenthood, even though by definition you, the parent, are now living in close proximity to at least one extra person. Now, I'm not a lonely mom any more. Lars and Saskia and Benjy fill me and complete me, in all kinds of lovely ways. For me, the loneliness came when I was a new mother. I had always lived a life of the mind, but the life of a new mother is emphatically a life of the body. I missed my intellectual life. At first I resisted this. When Saskia was one week old I read her The Tempest. Yep. The whole thing. My favorite part was when Prospero, the rightful Duke of Milan, tells his daughter, Miranda, how when she was a bitty baby they'd been cast away by Prospero's scheming brother, plunked on a ratty boat with no sails and launched out to sea.
Miranda says, Alack, what trouble
Was I then to you!
And Prospero replies, O, a cherubin
Thou wast that did preserve me. Thou didst smile,
Infused with a fortitude from heaven...
I lovedlovedloved this. I would recite it while gazing at the sweet face of my baby, my cherubin, and think: I'm lonely but I am fulfilled. My baby will preserve me. And in so many ways, she did.
When Benjy came along I thought my life was too hectic for loneliness, but I was wrong. The thing about Ben that was most isolating was his difference from the "standard" way of being. He missed every milestone. Was creeping when he should have been walking (he never bothered to crawl). Was jargoning when he should have been talking. Was flapping his hands in a way that made other moms stare. The distance between me and those other moms was a palpable thing. I did not like it. And I think I did not like them, either. A sympathetic smile would have gone a long way with me at that lonely period in my life. There weren't many of them -- we were just too weird. The way I see it now, ours was a new normal -- and the world wasn't ready for us.
I'm not lonely anymore because I've found a community, in person and online. I cherish that community. I hope Ben will someday find his own community, so maybe the ache of emptiness will go away. I wish that for him fiercely, and with a mother's love.
I am quite well acquainted with Loneliness, thank you, and I do not like Her. My loneliest interlude was during my first marriage. Five years of it. You see, I was passionate about certain things, and J-- was not. Nor was he a good pretend enthusiast about my special things. So, when we went to the opera (and yes, he does get credit for going) he mainly joked about getting a pair of glasses with fake eyes painted on the lenses, so he could sleep without any of those (evidently stupid) opera people noticing. He never actually listened to, or watched, or -- God forbid -- tried to appreciate, the musical/theatrical/visual spectacle unfolding before his eyes. Even when it was Mozart, whose operas are simply NOT SLEEP INDUCING.
Then there was the time I felt an urgent need to read him Oscar Wilde's story "The Selfish Giant." (Go read this IMMEDIATELY if you haven't already, and when you cry, tell yourself it's a completely reasonable thing to do. I will be there with you in spirit, happily sobbing.) I was reading away, all choked up, and picked up J-- in my peripheral vision. What he was doing did not inspire feelings of joy in me. He was glancing at his watch and stifling a sigh. He just did not get it.
Not connecting with your significant other makes you lonely. So can parenthood, even though by definition you, the parent, are now living in close proximity to at least one extra person. Now, I'm not a lonely mom any more. Lars and Saskia and Benjy fill me and complete me, in all kinds of lovely ways. For me, the loneliness came when I was a new mother. I had always lived a life of the mind, but the life of a new mother is emphatically a life of the body. I missed my intellectual life. At first I resisted this. When Saskia was one week old I read her The Tempest. Yep. The whole thing. My favorite part was when Prospero, the rightful Duke of Milan, tells his daughter, Miranda, how when she was a bitty baby they'd been cast away by Prospero's scheming brother, plunked on a ratty boat with no sails and launched out to sea.
Miranda says, Alack, what trouble
Was I then to you!
And Prospero replies, O, a cherubin
Thou wast that did preserve me. Thou didst smile,
Infused with a fortitude from heaven...
I lovedlovedloved this. I would recite it while gazing at the sweet face of my baby, my cherubin, and think: I'm lonely but I am fulfilled. My baby will preserve me. And in so many ways, she did.
When Benjy came along I thought my life was too hectic for loneliness, but I was wrong. The thing about Ben that was most isolating was his difference from the "standard" way of being. He missed every milestone. Was creeping when he should have been walking (he never bothered to crawl). Was jargoning when he should have been talking. Was flapping his hands in a way that made other moms stare. The distance between me and those other moms was a palpable thing. I did not like it. And I think I did not like them, either. A sympathetic smile would have gone a long way with me at that lonely period in my life. There weren't many of them -- we were just too weird. The way I see it now, ours was a new normal -- and the world wasn't ready for us.
I'm not lonely anymore because I've found a community, in person and online. I cherish that community. I hope Ben will someday find his own community, so maybe the ache of emptiness will go away. I wish that for him fiercely, and with a mother's love.
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