Okay, so I'll admit that I thought of writing this post while watching Covert Affairs with the kitten on my lap. The notion that the truth is complicated applies to plenty of us who aren't in the C.I.A. The "truth" I'm talking about is this:
There's another reason why it's so hard for me when someone asks, "how's Max?". The truth is, I don't actually know how he is. That's not an easy thing for the mom of an 8 year old, and sounds very existential, or like I mean it has something to do with autism. But I mean that I literally don't know how he is. Dave and I talk to him about every 2-3 weeks, and we write to him a few times a week.
He writes us a letter every week, but that doesn't help me understand how he is. The first letter he wrote, on a scrap of paper that had obviously been balled up a few times, said "Dear Mom, I hate this place. I have no friends. I'm having even more fits than at home. I love you. Max B.".
So what do I do with that? The second letter was about 2 sentences, as well, on an equally abused piece of paper. I don't know how he is. I'm like the anti-helicopter mom. I don't know what he's eating or wearing, and I don't know how his school day is going. I don't know what he's doing this afternoon....soccer, board games, hiking? No idea. For all those moms who are out there over-achieving at this mom gig, I am pulling the average back to the middle by having no clue what my kid is up to at any given moment.
Now and then I talk to friends with kids who are thinking about where they might go to high school, and I always mention the wonderful Quaker boarding school I attended. I think that boarding school is an amazing option, and allows growth of adolescents in a way that rarely happens at home. I didn't choose to have an eight year old who needed this option, but I was always open to it for him later. I just don't have words for what it feels like when someone says, in regards to their almost high-schooler, "but I could never just send my child away".
It must be nice to have choices.
Wednesday, September 22, 2010
Monday, September 20, 2010
It's not just a cat
Over the weekend, Dave and I found two stray kittens in the woods near his parents' house. Not really strays, I suppose. They'd obviously been abandoned there, close to a park. We tried to rescue both, but could only manage to get one of them. A beautiful black kitten, about 8 weeks old. Tiny, really, and certainly not able to care for herself in the woods.
Henry was initially terrified, wondering what the heck we were thinking putting wild animals in the car, but he quickly came around. I don't write about him much. After all, he's the normal kid, the neuro-typical kid, the regular kid. Whatever you want to call him, he's the collateral damage in our house. When Max is home, he gets virtually no attention, and I spend the rest of my time trying to make up for those deficient, lean times.
But then Henry came around, and named the kitten Rosie. We stopped to buy her a bag of kitten chow, some milk, a litter box. We didn't really think we'd keep her. I carefully avoided using her name, just saying "the kitten". Henry has asthma, some allergies. And did we want a cat? Henry's been begging for a pet since Max left for boarding school a year ago. We've been saying no all along. Too much work, not enough time...the usual excuses. We just didn't feel ready to take care of another living thing. But then there she was. Was this the way we'd get a cat?
We told Henry we would consider it, and then he started sniffling, sneezing, with itchy eyes. Perhaps we couldn't keep the kitten. A friend said that some people get used to the cat dander after a week or so. So maybe we'd keep her...see how it goes. Henry was...happy. I don't want to make it sound like he's an unhappy kid, because he isn't. He's generally okay, satisfied, happy-ish. He's not the kind of kid who overflows with happy. When I ask him how his day was, he always says "good-ish, bad-ish" no matter how great it really was. It's like a daily hit in the gut, that this poor kid can't just enjoy a great day at his wonderful school, but it's a hit in the gut I've gotten used to. How happy could I expect him to be, really? His brother has been virtually taken away from him, and he's not any closer to making peace with that than his father or I am.
He went off to school just delighted. Bouncing in his booster seat all the way to school. He brought a photo of Rosie to show his classmates. I was feeling good today, like a great mom, like I let the universe decide something for me by dropping a kitten in my lap, and aren't I clever?
Then the phone rang. It was Henry's school. He'd been wheezing, and needed his inhaler. I tried not to assume that it was due to the kitten, even though he hasn't needed his inhaler over a month. Bad luck? His inhaled worked just fine, and he got on with his day at school. I picked him up from school at the regular time and he just couldn't wait to get home to see Rosie. He was going to play with her, and tell her a story. He wanted to read her the book he'd brought home from school, all about colors. He just seemed so relaxed, like Henry at his best.
But while we played with the kitten this afternoon, Henry started wheezing again. He's never needed his inhaler twice in a day. It felt ominous. How do I reconcile these things? I feel like Henry's happiness hinges upon this kitten, but his asthma is a mess, and I do need to keep the poor kid out of the hospital. I talked to Henry, and explained that we might need to find the kitten a different home. He nodded solemnly, and said he was going to go watch TV alone. Later, he cried in my lap, and told me that he just needed a pet so badly, and that he just had to have one. If not Rosie, then maybe a dog? A guinea pig?
Damn it, I don't want a dog or a guinea pig. I want to keep this kitten. It feels unfair, AGAIN. Why do my kids have to get the short straw over and over? Why can't Henry just breathe like a regular kid? I have so little to offer him. I can't make his brother normal. I can't always protect Henry when Max lashes out. I want him to be happy. Not deliriously happy, not happier than anybody else. I just want him to stop suffering such terrible losses and not feel so alone in this world. He already feels like he's lost a brother...he's certainly lost anybody's idea of a brother. Why does he have to lose this kitten too?
Henry was initially terrified, wondering what the heck we were thinking putting wild animals in the car, but he quickly came around. I don't write about him much. After all, he's the normal kid, the neuro-typical kid, the regular kid. Whatever you want to call him, he's the collateral damage in our house. When Max is home, he gets virtually no attention, and I spend the rest of my time trying to make up for those deficient, lean times.
But then Henry came around, and named the kitten Rosie. We stopped to buy her a bag of kitten chow, some milk, a litter box. We didn't really think we'd keep her. I carefully avoided using her name, just saying "the kitten". Henry has asthma, some allergies. And did we want a cat? Henry's been begging for a pet since Max left for boarding school a year ago. We've been saying no all along. Too much work, not enough time...the usual excuses. We just didn't feel ready to take care of another living thing. But then there she was. Was this the way we'd get a cat?
We told Henry we would consider it, and then he started sniffling, sneezing, with itchy eyes. Perhaps we couldn't keep the kitten. A friend said that some people get used to the cat dander after a week or so. So maybe we'd keep her...see how it goes. Henry was...happy. I don't want to make it sound like he's an unhappy kid, because he isn't. He's generally okay, satisfied, happy-ish. He's not the kind of kid who overflows with happy. When I ask him how his day was, he always says "good-ish, bad-ish" no matter how great it really was. It's like a daily hit in the gut, that this poor kid can't just enjoy a great day at his wonderful school, but it's a hit in the gut I've gotten used to. How happy could I expect him to be, really? His brother has been virtually taken away from him, and he's not any closer to making peace with that than his father or I am.
He went off to school just delighted. Bouncing in his booster seat all the way to school. He brought a photo of Rosie to show his classmates. I was feeling good today, like a great mom, like I let the universe decide something for me by dropping a kitten in my lap, and aren't I clever?
Then the phone rang. It was Henry's school. He'd been wheezing, and needed his inhaler. I tried not to assume that it was due to the kitten, even though he hasn't needed his inhaler over a month. Bad luck? His inhaled worked just fine, and he got on with his day at school. I picked him up from school at the regular time and he just couldn't wait to get home to see Rosie. He was going to play with her, and tell her a story. He wanted to read her the book he'd brought home from school, all about colors. He just seemed so relaxed, like Henry at his best.
But while we played with the kitten this afternoon, Henry started wheezing again. He's never needed his inhaler twice in a day. It felt ominous. How do I reconcile these things? I feel like Henry's happiness hinges upon this kitten, but his asthma is a mess, and I do need to keep the poor kid out of the hospital. I talked to Henry, and explained that we might need to find the kitten a different home. He nodded solemnly, and said he was going to go watch TV alone. Later, he cried in my lap, and told me that he just needed a pet so badly, and that he just had to have one. If not Rosie, then maybe a dog? A guinea pig?
Damn it, I don't want a dog or a guinea pig. I want to keep this kitten. It feels unfair, AGAIN. Why do my kids have to get the short straw over and over? Why can't Henry just breathe like a regular kid? I have so little to offer him. I can't make his brother normal. I can't always protect Henry when Max lashes out. I want him to be happy. Not deliriously happy, not happier than anybody else. I just want him to stop suffering such terrible losses and not feel so alone in this world. He already feels like he's lost a brother...he's certainly lost anybody's idea of a brother. Why does he have to lose this kitten too?
Wednesday, September 8, 2010
This Time of Year
As anyone who has seen me around has surely noticed, I am not myself. I'm feeling flat. Not happy or sad, or angry, or fed up, just sort of flat. Max is up at his new school, so the daily chaos has receded. Henry's school has just begun, and I'm grateful that he's in a place that values him so thoroughly, and understands what he's been through.
But, really, we're always in it, rather than through it. The Jewish holidays are hard for a totally atypical Jewish family like ours. I don't miss Max...that would imply that I wish he were here, and I certainly don't feel that way. If Max were here, I would not be able to go to synagogue on Rosh Hashana, or enjoy a holiday meal with our family. Of course, presently, I don't really feel like going to synagogue. I will be surrounded by families, intact families with parents arguing with their children over going to the kids' programming, everyone complaining that kids should stop running in the hallways. I'll be reading the prayers, wondering if I should really say these words that I don't believe. I don't really feel that any deity has helped me out, and I certainly won't feel (on Yom Kippur) that I have anything to atone for. Why should I atone when I'm already being punished? Because if there is a G-d like the one we pray to on these High Holidays, then I want nothing to do with Him.
Mostly, the prayers of the High Holidays force me to imagine G-d as Star Trek: The Next Generation's Q
http://en.wikipedia.org/wiki/Q_%28Star_Trek%29.
And then it doesn't feel like religion or faith anymore, it just makes me think about Will Wheaton and how damn funny he's been on Big Bang Theory. But back to the synagogue experience.
I'm faced with everything my family isn't. And people kindly ask about Max. Many are shocked that I haven't brought him home from school for the holidays, which shows how much they know. People ask how he is, but only give me about 4 seconds to respond. It takes a few minutes for me to say how Max is. I want to approach it slowly, and really tell them. But hardly anyone actually wants to know. I wish that I didn't know. So, I give my usual answer, "well, you know" or "he's doing his thing". I act like I'm all cool with how much THIS SUCKS. Because hiding my feelings is key to being the cool chick that I am. I act like I'm all philosophical. I say stupid things about people having their own way, and Max being a different kind of person, blah blah blah. But I'm in synagogue, and I'm supposed to be not angry at G-d, especially at the holidays, which is the only time I see most of these people at shul.
I'm there plenty, for Shabbat mornings as well as Board meetings, which is how I know that this idea of G-d isn't working for me, not at all. For a while, I had some faith in it. And then I stopped having faith, but I felt like I could fake my way through it, and maybe if I said the prayers, every word, maybe I'd get something in return. But when I read Shemoneh Esrei (http://www.chabad.org/multimedia/media_cdo/aid/1036241/jewish/Amidah-Shemoneh-Esrei-1.htm) I feel like a liar. I feel like I don't believe any of what I'm saying, and then I wonder if I should really be saying it. Particularly this part, "You sustain the living with lovingkindness, you revive the dead with great mercy, you support the falling, heal the sick, set free the bound and keep faith with those who sleep in the dust."
I know I'm not the only one who struggles, but I'm just not getting good answer on addressing my struggle. The more time I spend at shul, the more aggravated I become. So if you don't see me after the first day of Rosh Hashana, you'll know why.
But, really, we're always in it, rather than through it. The Jewish holidays are hard for a totally atypical Jewish family like ours. I don't miss Max...that would imply that I wish he were here, and I certainly don't feel that way. If Max were here, I would not be able to go to synagogue on Rosh Hashana, or enjoy a holiday meal with our family. Of course, presently, I don't really feel like going to synagogue. I will be surrounded by families, intact families with parents arguing with their children over going to the kids' programming, everyone complaining that kids should stop running in the hallways. I'll be reading the prayers, wondering if I should really say these words that I don't believe. I don't really feel that any deity has helped me out, and I certainly won't feel (on Yom Kippur) that I have anything to atone for. Why should I atone when I'm already being punished? Because if there is a G-d like the one we pray to on these High Holidays, then I want nothing to do with Him.
Mostly, the prayers of the High Holidays force me to imagine G-d as Star Trek: The Next Generation's Q
http://en.wikipedia.org/wiki/Q_%28Star_Trek%29.
And then it doesn't feel like religion or faith anymore, it just makes me think about Will Wheaton and how damn funny he's been on Big Bang Theory. But back to the synagogue experience.
I'm faced with everything my family isn't. And people kindly ask about Max. Many are shocked that I haven't brought him home from school for the holidays, which shows how much they know. People ask how he is, but only give me about 4 seconds to respond. It takes a few minutes for me to say how Max is. I want to approach it slowly, and really tell them. But hardly anyone actually wants to know. I wish that I didn't know. So, I give my usual answer, "well, you know" or "he's doing his thing". I act like I'm all cool with how much THIS SUCKS. Because hiding my feelings is key to being the cool chick that I am. I act like I'm all philosophical. I say stupid things about people having their own way, and Max being a different kind of person, blah blah blah. But I'm in synagogue, and I'm supposed to be not angry at G-d, especially at the holidays, which is the only time I see most of these people at shul.
I'm there plenty, for Shabbat mornings as well as Board meetings, which is how I know that this idea of G-d isn't working for me, not at all. For a while, I had some faith in it. And then I stopped having faith, but I felt like I could fake my way through it, and maybe if I said the prayers, every word, maybe I'd get something in return. But when I read Shemoneh Esrei (http://www.chabad.org/multimedia/media_cdo/aid/1036241/jewish/Amidah-Shemoneh-Esrei-1.htm) I feel like a liar. I feel like I don't believe any of what I'm saying, and then I wonder if I should really be saying it. Particularly this part, "You sustain the living with lovingkindness, you revive the dead with great mercy, you support the falling, heal the sick, set free the bound and keep faith with those who sleep in the dust."
I know I'm not the only one who struggles, but I'm just not getting good answer on addressing my struggle. The more time I spend at shul, the more aggravated I become. So if you don't see me after the first day of Rosh Hashana, you'll know why.
Thursday, August 26, 2010
In Honor of Tara, Dayna, Lenore, and Alix
The above mentioned are the glorious members of my "committee". If I was the kind of chick who used the word "girlfriend", they'd be it. But I'm not that kind of chick.
They've been through it all with me, and they continue to amaze me. I've dropped Henry off at their houses when I've had to hospitalize Max. I've called them and invited him for sleepovers at their houses. And I've interrupted their vacations to see if they can take Henry. That's what I did today. I called Tara to see if Henry could invade her day.
Max, Henry, and I were on our way home from a reasonably successful trip to Danbury Mall. The trip home wasn't reasonable, though. It never really is, and I always swear to myself that I'll never drive them anywhere again. We're alive because we've gotten lucky, but that's about it. Max punched Henry with a huge closed fist about 20 times today on the ride home, then he took Henry's seatbelt off. I leaned forward to avoid a flying water bottle and then veered right just in time to miss a huge white Escalade, whose driver had every right to lean on the horn. How much should I let Max hurt Henry? How many times will we be lucky in the car? So I called some committee members. Lenore wasn't home. Tara answered her cell phone, but she was in Boston. Home tomorrow, she said. Don't think I wasn't planning on taking her up on that unspoken offer.
I had recently called on both Dayna and Alix, so I decided not to bother them. Figured we'd just make it through, somehow, like we always do. We were only 10 more minutes from home, and Max wanted to watch Return of the Jedi, again. I figured I could isolate him up in my bed watching that, and maybe Henry and I could catch a break.
That's when my phone rang. It was Dayna, who had heard that I could use some help. Tara had called her to let her know. Did Henry want to come to the pool with Dayna and her boys? Sure, she could pick him up.
I wanted to cry. So grateful for friends like these. I am not that girl with millions of friends. But I have what I need.
They've been through it all with me, and they continue to amaze me. I've dropped Henry off at their houses when I've had to hospitalize Max. I've called them and invited him for sleepovers at their houses. And I've interrupted their vacations to see if they can take Henry. That's what I did today. I called Tara to see if Henry could invade her day.
Max, Henry, and I were on our way home from a reasonably successful trip to Danbury Mall. The trip home wasn't reasonable, though. It never really is, and I always swear to myself that I'll never drive them anywhere again. We're alive because we've gotten lucky, but that's about it. Max punched Henry with a huge closed fist about 20 times today on the ride home, then he took Henry's seatbelt off. I leaned forward to avoid a flying water bottle and then veered right just in time to miss a huge white Escalade, whose driver had every right to lean on the horn. How much should I let Max hurt Henry? How many times will we be lucky in the car? So I called some committee members. Lenore wasn't home. Tara answered her cell phone, but she was in Boston. Home tomorrow, she said. Don't think I wasn't planning on taking her up on that unspoken offer.
I had recently called on both Dayna and Alix, so I decided not to bother them. Figured we'd just make it through, somehow, like we always do. We were only 10 more minutes from home, and Max wanted to watch Return of the Jedi, again. I figured I could isolate him up in my bed watching that, and maybe Henry and I could catch a break.
That's when my phone rang. It was Dayna, who had heard that I could use some help. Tara had called her to let her know. Did Henry want to come to the pool with Dayna and her boys? Sure, she could pick him up.
I wanted to cry. So grateful for friends like these. I am not that girl with millions of friends. But I have what I need.
Wednesday, August 25, 2010
Max and Oliver Sacks
We've just come back from 4 days at the beach. We rented a fabulous Arts and Crafts style house for a week in Seaside Park, NJ. It was steps from the beach, and even with lousy weather, I was in heaven drinking coffee on the porch at 6 AM every day.
But Max wasn't. After 4 days, he was done. He pitched a huge fit, screaming, throwing things in our rented house, biting my arm and scratching me so hard his fingernails bent and broke in my right wrist. When he calmed down, he was able to explain to me that every night when he goes to bed, he forgets all about the house we had rented. He forgets where things are, and how to operate the TV remote, and what chair is comfortable. Every night, he said, he "forgets this house". And when he wakes up in the morning, "I have to start all over again," he said. This description (of what is some serious brain dysfunction) could not be ignored. I wondered what Oliver Sacks would think. Then Henry confessed he was home-sick, and willing to come home, as well.
So I gave Max his meds, fed him some dinner and stuck the boys in front of the TV while I packed up our well-stocked beach house in about an hour. Then we started for home. I tried to be angry, or depressed, or feel like it was unfair. I didn't really feel any of those things. I am not hopeless, but I am without hope. This is just my life, and I can do nothing to improve or change it. This is as good as it gets, and mostly, as bad as it gets, too.
It was a long drive home, in some light rain. The kids slept and watched movies, and I just drove, thinking about as little as I could. Thinking isn't any more helpful than therapy is, most of the time. What if I realize that this sucks. Sucks so much that it isn't a life unless Max is somewhere else. What might that mean? Max goes to school on September 2, and the Jewish holidays come shortly after that. He'll be away for them for the second time, which means that I'll actually have the ability to attend services on my own terms. Which is tough, because I am not on speaking terms with G-d right now. I don't much feel like atoning, since this life feels like a punishment much of the time. Am I supposed to feel sorry for things I've done, even before Max's scratches into my arm have had the chance to heal? I'm not sorry. I'm kind of proud I haven't done worse, given what's come my way this year.
I miss the beach. Even in the rain, I loved it. I loved the house, the unfamiliar coffee mugs, and the few blocks I had to walk to get a taco. I've always wanted to rent a beach house, and now I have. Sort of. Dave and I will wait until the kids get so big that they won't want to come, I guess. And then I'll sit on my rented porch and drink my coffee at 6 AM.
But Max wasn't. After 4 days, he was done. He pitched a huge fit, screaming, throwing things in our rented house, biting my arm and scratching me so hard his fingernails bent and broke in my right wrist. When he calmed down, he was able to explain to me that every night when he goes to bed, he forgets all about the house we had rented. He forgets where things are, and how to operate the TV remote, and what chair is comfortable. Every night, he said, he "forgets this house". And when he wakes up in the morning, "I have to start all over again," he said. This description (of what is some serious brain dysfunction) could not be ignored. I wondered what Oliver Sacks would think. Then Henry confessed he was home-sick, and willing to come home, as well.
So I gave Max his meds, fed him some dinner and stuck the boys in front of the TV while I packed up our well-stocked beach house in about an hour. Then we started for home. I tried to be angry, or depressed, or feel like it was unfair. I didn't really feel any of those things. I am not hopeless, but I am without hope. This is just my life, and I can do nothing to improve or change it. This is as good as it gets, and mostly, as bad as it gets, too.
It was a long drive home, in some light rain. The kids slept and watched movies, and I just drove, thinking about as little as I could. Thinking isn't any more helpful than therapy is, most of the time. What if I realize that this sucks. Sucks so much that it isn't a life unless Max is somewhere else. What might that mean? Max goes to school on September 2, and the Jewish holidays come shortly after that. He'll be away for them for the second time, which means that I'll actually have the ability to attend services on my own terms. Which is tough, because I am not on speaking terms with G-d right now. I don't much feel like atoning, since this life feels like a punishment much of the time. Am I supposed to feel sorry for things I've done, even before Max's scratches into my arm have had the chance to heal? I'm not sorry. I'm kind of proud I haven't done worse, given what's come my way this year.
I miss the beach. Even in the rain, I loved it. I loved the house, the unfamiliar coffee mugs, and the few blocks I had to walk to get a taco. I've always wanted to rent a beach house, and now I have. Sort of. Dave and I will wait until the kids get so big that they won't want to come, I guess. And then I'll sit on my rented porch and drink my coffee at 6 AM.
Monday, August 16, 2010
Feeling Better
Yesterday was a non-violent day, so I'm feeling a bit better. It's just all so moment-to-moment; there seems to be nothing to hang on to.
Today Max is having some oral surgery, which means he won't be allowed to eat or drink for 3 hours prior; this is an eternity for him. I will have to choose between letting him eat (and explaining myself to our great oral surgeon) or placing myself in harm's way, between Max and the pantry. It's something the therapist-types never understand. They say I should just firmly set limits, and not let Max get to the food. If I tell them that he will draw my blood, they look confused. Did they think I didn't learn how to say no when I was 2? I know how, I just have difficulty allowing harm to come just to make a point.
I have grey bruises on my arm, just healing from a few days ago...I didn't even say no, then. I still don't really understand what happened in the car that made Max decide he undo his brother's seatbelt and try to crash the car. There is no understanding Max's motivations; he has autism, after all.
But today is okay, so far. okay is relative, of course. Offended by the limitations of a Pokemon trainer, he destroyed some Lego instructions that belong to his brother, and kicked some Lego ships, but hasn't hurt anyone yet. And he's taken his now-pared-down meds. Lately we find ourselves wondering if the meds are doing anything. Take them/don't take them. Nothing ever changes here, when Max is home. I wonder if anything ever will. I almost never think about the future; how can I, with a life like this?
This day is like knowing that a twister is coming...in 40 minutes, Max needs to stop eating for 3 whole hours. The twister might hit the house; we are certainly in its path. But it might veer around us; sometimes Max can really rise to the occasion, especially for medical procedures. And how much should I let him hurt me before I just give him the damn chips? How much shall I prove myself as the perfect mother-of-autistic-child? Do I let him break my fingers, scratch until I bleed?
Do I have the self-control to stay calm while he hurts me, to take the abuse and torture? I'm the Michael Weston of the parenting milieu. I can stay calm, keep it together, act like I'm not wounded, tie my feelings up and swallow them down, choking only a little.
When I described this technique of coping, in front of a whole "parenting group", the facilitator, Jonathan, asked me what I thought the long-term effects of this emotion-swallowing could be. I told him, "I'll probably get cancer some day". He looked shocked by this confession, like he thought he'd explain some magical mind-body connection to a lowly parent like me.
Today Max is having some oral surgery, which means he won't be allowed to eat or drink for 3 hours prior; this is an eternity for him. I will have to choose between letting him eat (and explaining myself to our great oral surgeon) or placing myself in harm's way, between Max and the pantry. It's something the therapist-types never understand. They say I should just firmly set limits, and not let Max get to the food. If I tell them that he will draw my blood, they look confused. Did they think I didn't learn how to say no when I was 2? I know how, I just have difficulty allowing harm to come just to make a point.
I have grey bruises on my arm, just healing from a few days ago...I didn't even say no, then. I still don't really understand what happened in the car that made Max decide he undo his brother's seatbelt and try to crash the car. There is no understanding Max's motivations; he has autism, after all.
But today is okay, so far. okay is relative, of course. Offended by the limitations of a Pokemon trainer, he destroyed some Lego instructions that belong to his brother, and kicked some Lego ships, but hasn't hurt anyone yet. And he's taken his now-pared-down meds. Lately we find ourselves wondering if the meds are doing anything. Take them/don't take them. Nothing ever changes here, when Max is home. I wonder if anything ever will. I almost never think about the future; how can I, with a life like this?
This day is like knowing that a twister is coming...in 40 minutes, Max needs to stop eating for 3 whole hours. The twister might hit the house; we are certainly in its path. But it might veer around us; sometimes Max can really rise to the occasion, especially for medical procedures. And how much should I let him hurt me before I just give him the damn chips? How much shall I prove myself as the perfect mother-of-autistic-child? Do I let him break my fingers, scratch until I bleed?
Do I have the self-control to stay calm while he hurts me, to take the abuse and torture? I'm the Michael Weston of the parenting milieu. I can stay calm, keep it together, act like I'm not wounded, tie my feelings up and swallow them down, choking only a little.
When I described this technique of coping, in front of a whole "parenting group", the facilitator, Jonathan, asked me what I thought the long-term effects of this emotion-swallowing could be. I told him, "I'll probably get cancer some day". He looked shocked by this confession, like he thought he'd explain some magical mind-body connection to a lowly parent like me.
Friday, August 13, 2010
Finding the Me
I've never been a fan of the phrase "finding myself". It's always seemed self-indulgent to me. It doesn't resonate for me that you might need to "find" yourself via travel, or any other mechanism, really. I've always felt that if you can't find yourself where you are, then you're probably doing something wrong. After all, you're in there somewhere, so what's your fucking problem?
But this is what I'm feeling now. I've lost myself. Yesterday was a reasonable day for Max. He refused to leave the house all day, but was basically calm. He used the computer to watch Pokemon episodes, played hours of Lego Star Wars on his DS, and ate a lot. But that's it. We didn't really talk about anything...other than Pokemon or Star Wars, or what's next up for snack. Max and I didn't connect at all, really. Not because he was wild or out of control, and not because I was ignoring him. Just because he has autism, and connecting with me is a non-priority for him. So where was I?
Somewhere in my head, I guess. I feel lost in there. I should be grateful for the quiet, I guess (except for the music from Pokemon/Star Wars). I should be so grateful for a non-violent day that nothing else matters. But I don't feel grateful. There's a lot of nothingness in my relationship with Max. There's little to connect with, and even less to enjoy. Mostly what I feel is this on-going ambiguous loss.
I haven't lost a child, not really. But I've lost the idea of some regular kid, of living a regular life. Friends are researching sleep-away camps for next summer for their regular 8-year olds. They go visit, talk to their kids about them, make choices based on their priorities as a family. I love my friends, but I feel resentful, angry, and aggravated by their experiences.
I never had grand expectations or ideas for my kids. I never cared about "high achievement". I don't give a crap where they go to college or what they do with their lives. But I thought my kids would love me, occasionally listen to me, and go to regular schools. I never thought I'd feel nausea upon seeing a short bus, like Max used to ride. I didn't think I'd have a kid too disabled to ride the short bus.
I didn't think I'd send a seven year old to boarding school, and I never thought I'd wish my kid didn't live with me at all.
The ambiguous loss is complicated, persistent, fulminant. I didn't lose a child, not really, but I kind of did. He's here, but not here. Every time I make any sort of peace with it, something else comes and smacks me in the face. Like other parents saying, "I can't believe my baby is going away to camp!". It's a sucker punch for me. Their eight year old is going away to camp. Big deal. I flashback to Max's first psychiatric hospitalization. I have nothing in common with this parent.
Those of you who have known me for a long time know that I have never really fit in like a normal person. I just can't really seem to find it within my self to give a crap what other people think. I am arrogant, at best, and I'm just not all that interested in living my life the way other people live theirs. On some level, though, I wish that I fit in, just a little. And I really thought for a while, there, when I married David, that I could slide into normality, just a little. And until we had Max, I did. I was a nurse, a smart nurse, married to a smart doctor. We were cute, happy, normal-ish. And then came Max, and he stole it out from under me. I am not normal, I don't have normal kids or a normal life, and I can't understand the lives of normal people, even a little.
I fake it sometimes, when Max is away at school. I partition my "special needs" nonsense, and I just go about things like a mom with one typical kid. I go to PA meetings, and board meeting, and I smile, exercise, work on my Master's. But underneath is all this, that you all know about. It's like I'm a secret alcoholic, or maybe like a werewolf. Certain times of year (when Max is home) my life is bloody, chaotic; I hit rock-bottom and pace my house like an addict who can't get a fix. I am helpless, nauseated, brittle, and stuck.
And then Max goes back to New Hampshire, and I find myself here, alone in my house, relieved of this odd burden. It's mysterious; will I ever be able to merge these two lives into something that makes sense? How do I live an authentic life, when I'm paralyzed periodically by my needy child?
But this is what I'm feeling now. I've lost myself. Yesterday was a reasonable day for Max. He refused to leave the house all day, but was basically calm. He used the computer to watch Pokemon episodes, played hours of Lego Star Wars on his DS, and ate a lot. But that's it. We didn't really talk about anything...other than Pokemon or Star Wars, or what's next up for snack. Max and I didn't connect at all, really. Not because he was wild or out of control, and not because I was ignoring him. Just because he has autism, and connecting with me is a non-priority for him. So where was I?
Somewhere in my head, I guess. I feel lost in there. I should be grateful for the quiet, I guess (except for the music from Pokemon/Star Wars). I should be so grateful for a non-violent day that nothing else matters. But I don't feel grateful. There's a lot of nothingness in my relationship with Max. There's little to connect with, and even less to enjoy. Mostly what I feel is this on-going ambiguous loss.
I haven't lost a child, not really. But I've lost the idea of some regular kid, of living a regular life. Friends are researching sleep-away camps for next summer for their regular 8-year olds. They go visit, talk to their kids about them, make choices based on their priorities as a family. I love my friends, but I feel resentful, angry, and aggravated by their experiences.
I never had grand expectations or ideas for my kids. I never cared about "high achievement". I don't give a crap where they go to college or what they do with their lives. But I thought my kids would love me, occasionally listen to me, and go to regular schools. I never thought I'd feel nausea upon seeing a short bus, like Max used to ride. I didn't think I'd have a kid too disabled to ride the short bus.
I didn't think I'd send a seven year old to boarding school, and I never thought I'd wish my kid didn't live with me at all.
The ambiguous loss is complicated, persistent, fulminant. I didn't lose a child, not really, but I kind of did. He's here, but not here. Every time I make any sort of peace with it, something else comes and smacks me in the face. Like other parents saying, "I can't believe my baby is going away to camp!". It's a sucker punch for me. Their eight year old is going away to camp. Big deal. I flashback to Max's first psychiatric hospitalization. I have nothing in common with this parent.
Those of you who have known me for a long time know that I have never really fit in like a normal person. I just can't really seem to find it within my self to give a crap what other people think. I am arrogant, at best, and I'm just not all that interested in living my life the way other people live theirs. On some level, though, I wish that I fit in, just a little. And I really thought for a while, there, when I married David, that I could slide into normality, just a little. And until we had Max, I did. I was a nurse, a smart nurse, married to a smart doctor. We were cute, happy, normal-ish. And then came Max, and he stole it out from under me. I am not normal, I don't have normal kids or a normal life, and I can't understand the lives of normal people, even a little.
I fake it sometimes, when Max is away at school. I partition my "special needs" nonsense, and I just go about things like a mom with one typical kid. I go to PA meetings, and board meeting, and I smile, exercise, work on my Master's. But underneath is all this, that you all know about. It's like I'm a secret alcoholic, or maybe like a werewolf. Certain times of year (when Max is home) my life is bloody, chaotic; I hit rock-bottom and pace my house like an addict who can't get a fix. I am helpless, nauseated, brittle, and stuck.
And then Max goes back to New Hampshire, and I find myself here, alone in my house, relieved of this odd burden. It's mysterious; will I ever be able to merge these two lives into something that makes sense? How do I live an authentic life, when I'm paralyzed periodically by my needy child?
Wednesday, August 11, 2010
Right Now
Max is home right now, which means that life is like hell. We brought him home early from his summer program; he had sounded unusually despondent and lonely, and something just made me feel like I needed to bring him home early. Sure enough, his school had completely ignored one of his medications. I'm not sure why, and they've come up with no explanation, but he hadn't gotten Abilify in about 3 weeks. He also told me that he'd gotten some other medication, not one of his. I have no idea where it came from, and again, his school isn't telling.
I never know how to explain life with Max at home. People ask me how Max is, and I say something meaningless, like, "well, you know". Because they don't know, and I don't know how to tell them without ruining their lives. Because if they knew that it's possible that Max will spit on me or punch me in the face if I say there are no more Cheez-Its, if I showed them the bruises from the events that led to 911 calls, I think they might actually have nightmares, or throw up. That's how I feel when I think about life with Max at home. I want to boot. It's the only reasonable response to living in fear of violence in my own home.
The violence is due to Max's rage and confusion...I think it can be painful for him to live in this world, where everything seems so random. And for me, to be a daily victim of his lashing out...I don't really have words. It's gotten bad, these last few days that he's been home. I've cried and screamed and protested...I used to not feel this so much, I used to lock it all down tight. Therapy has helped me to feel this pain, and to acknowledge my own needs. But that's not really helpful when my autistic/bipolar child says he'll kill me if I don't let him go out for Chinese food tomorrow night.
When things are bad, I say "I can't do this", and I weep, totally ashamed of my own weakness. But that doesn't mean anything, because no one is giving me a choice in this matter. I must do this, because this is my son.
The effects on me are considerable. It's hard for me to be a friend to anyone. I don't want to leave my house. I want to lock it all down tight, tie my emotions with bungee cords and bury them in the yard. I have difficulty tolerating the real violence in the world.
The violence in my life has led me, again, to pacifism. When I see fighting on television, I know how it feels and I want it gone from the world. I flash back to last August, when Max left bruises up and down my legs, bites on my wrists. I spent 40 long minutes restraining him in a parking lot, waiting for help to come. I was calm, steady, controlled, until the first EMT showed up, and then I let go, collapsing on pavement, letting it scrape my bruised legs, wondering how a person could live like this.
The answer is that no one can. Max heads back to boarding school September 2, and I am simply counting the days.
I never know how to explain life with Max at home. People ask me how Max is, and I say something meaningless, like, "well, you know". Because they don't know, and I don't know how to tell them without ruining their lives. Because if they knew that it's possible that Max will spit on me or punch me in the face if I say there are no more Cheez-Its, if I showed them the bruises from the events that led to 911 calls, I think they might actually have nightmares, or throw up. That's how I feel when I think about life with Max at home. I want to boot. It's the only reasonable response to living in fear of violence in my own home.
The violence is due to Max's rage and confusion...I think it can be painful for him to live in this world, where everything seems so random. And for me, to be a daily victim of his lashing out...I don't really have words. It's gotten bad, these last few days that he's been home. I've cried and screamed and protested...I used to not feel this so much, I used to lock it all down tight. Therapy has helped me to feel this pain, and to acknowledge my own needs. But that's not really helpful when my autistic/bipolar child says he'll kill me if I don't let him go out for Chinese food tomorrow night.
When things are bad, I say "I can't do this", and I weep, totally ashamed of my own weakness. But that doesn't mean anything, because no one is giving me a choice in this matter. I must do this, because this is my son.
The effects on me are considerable. It's hard for me to be a friend to anyone. I don't want to leave my house. I want to lock it all down tight, tie my emotions with bungee cords and bury them in the yard. I have difficulty tolerating the real violence in the world.
The violence in my life has led me, again, to pacifism. When I see fighting on television, I know how it feels and I want it gone from the world. I flash back to last August, when Max left bruises up and down my legs, bites on my wrists. I spent 40 long minutes restraining him in a parking lot, waiting for help to come. I was calm, steady, controlled, until the first EMT showed up, and then I let go, collapsing on pavement, letting it scrape my bruised legs, wondering how a person could live like this.
The answer is that no one can. Max heads back to boarding school September 2, and I am simply counting the days.
Saturday, April 17, 2010
Hospitalization, Round Two
So we took Max home. We were dazed from so many hours in the ER, confused as to what we were supposed to do next. We called Dr. L, who was shocked, and basically told us that it wasn't possible. He wanted to talk to them and get back to us. I hung up with him and told David what he'd said. Dave laughed. What else was there to do? We were worse off than ever. We had held out hope that this thing that we didn't want to do would be helpful, and we'd tried to do it, asked for help and been turned away.
Twenty minutes later, the phone rang. Dr. L. had spoken to them and confirmed our story. He offered us no next move. He suggested, as many had before, that if things got out of hand, I should call 211 and ask for the clinician on-call. They would help us, he said.
Obviously, a short trip to the emergency room hadn't fixed anything. Things were the same, except now we felt we had no emergency plan. Our plan had failed. A week later, the day after Thanksgiving, things became intolerably dangerous. I had bite marks on my arm, there were multiple new dents in the walls of the family room. Nothing had been held back this time. It seemed like the Earth was opening up and swallowing us.
I called 211, not sure what I was asking for, but doing what Dr L had told me to do. I think the clinician's name was Susan. I had never met her, so I tried to give a quick explanation. She said, “Alright, let me call around and see if I can find him a hospital bed”. She started to hang up the phone. “Wait!” I shouted. “That's what you're going to do? I don't understand.” She sounded surprised, “What did you think I could do?”. I didn't know the answer to the question. I didn't know what I thought. For so long, all the professionals had said we were doing something wrong. I always thought maybe they were right. Maybe they knew what to do, and would just do it if I was a good enough mom, if I let go of my pride and asked them for the help we needed. But it wasn't that way. They had nothing. They knew it, and I knew it. So I said OK. Find us a hospital bed. What choice did I have?
She found us a bed in White Plains, at the wildly multiply-named NY-Presbyterian Cornell Columbia White Plains Campus. Or something like that. I think “Weill” is also in the name. It was an old-school mental hospital. I want to call it an asylum, even. We packed everything up again, my parents and brother came and picked Henry up to bring him to their house in Newtown, and we headed to White Plains.
Despite the fact that they were expecting us, we waited for hours. Just the three of us, in a weird living room-type room, with some random magazines. Occasionally, an ambulance would come with a patient for their drunk-tank. The person was always only half-covered by a sheet, and the EMTs bringing the patient acted like UPS guys with an unwieldly package. The patients we saw arrive were frequent flyers; the admissions people seemed to know them well.
We waited three hours for insurance to approve the admission, and we were finally brought to a gray unit known as “Nichol's Cottage”. At one point it had been an actual cottage, but now they were waiting for a new, renovated pediatric psych unit. The halls were gray, the TV was on, and some listless kids stared at ESPN, which the nurses seemed to like. We got an orientation from a nurse named Sarah, who explained the rules, and gave us some phone numbers. The visiting hours were incredibly limited, unheard of for kids with better medical illnesses, like diabetes, or a broken leg. No, our kid had to do without us. Because, obviously, we were part of the problem.
Max seemed oddly relaxed when we left. He said goodbye, but didn't seem to really want anything from us. No hugs or kisses. He seemed unworried about the whole situation. I was trying to keep vomit down, wondering what the hell was happening. It was a long ride to Newtown, made longer by my parents call on the cell phone, telling us that Henry was missing us. Dave and I talked through the whole decision over and over again. At least we were all safe. We were all safe. We were all safe.
Twenty minutes later, the phone rang. Dr. L. had spoken to them and confirmed our story. He offered us no next move. He suggested, as many had before, that if things got out of hand, I should call 211 and ask for the clinician on-call. They would help us, he said.
Obviously, a short trip to the emergency room hadn't fixed anything. Things were the same, except now we felt we had no emergency plan. Our plan had failed. A week later, the day after Thanksgiving, things became intolerably dangerous. I had bite marks on my arm, there were multiple new dents in the walls of the family room. Nothing had been held back this time. It seemed like the Earth was opening up and swallowing us.
I called 211, not sure what I was asking for, but doing what Dr L had told me to do. I think the clinician's name was Susan. I had never met her, so I tried to give a quick explanation. She said, “Alright, let me call around and see if I can find him a hospital bed”. She started to hang up the phone. “Wait!” I shouted. “That's what you're going to do? I don't understand.” She sounded surprised, “What did you think I could do?”. I didn't know the answer to the question. I didn't know what I thought. For so long, all the professionals had said we were doing something wrong. I always thought maybe they were right. Maybe they knew what to do, and would just do it if I was a good enough mom, if I let go of my pride and asked them for the help we needed. But it wasn't that way. They had nothing. They knew it, and I knew it. So I said OK. Find us a hospital bed. What choice did I have?
She found us a bed in White Plains, at the wildly multiply-named NY-Presbyterian Cornell Columbia White Plains Campus. Or something like that. I think “Weill” is also in the name. It was an old-school mental hospital. I want to call it an asylum, even. We packed everything up again, my parents and brother came and picked Henry up to bring him to their house in Newtown, and we headed to White Plains.
Despite the fact that they were expecting us, we waited for hours. Just the three of us, in a weird living room-type room, with some random magazines. Occasionally, an ambulance would come with a patient for their drunk-tank. The person was always only half-covered by a sheet, and the EMTs bringing the patient acted like UPS guys with an unwieldly package. The patients we saw arrive were frequent flyers; the admissions people seemed to know them well.
We waited three hours for insurance to approve the admission, and we were finally brought to a gray unit known as “Nichol's Cottage”. At one point it had been an actual cottage, but now they were waiting for a new, renovated pediatric psych unit. The halls were gray, the TV was on, and some listless kids stared at ESPN, which the nurses seemed to like. We got an orientation from a nurse named Sarah, who explained the rules, and gave us some phone numbers. The visiting hours were incredibly limited, unheard of for kids with better medical illnesses, like diabetes, or a broken leg. No, our kid had to do without us. Because, obviously, we were part of the problem.
Max seemed oddly relaxed when we left. He said goodbye, but didn't seem to really want anything from us. No hugs or kisses. He seemed unworried about the whole situation. I was trying to keep vomit down, wondering what the hell was happening. It was a long ride to Newtown, made longer by my parents call on the cell phone, telling us that Henry was missing us. Dave and I talked through the whole decision over and over again. At least we were all safe. We were all safe. We were all safe.
Monday, April 12, 2010
Hospitalization, Round One
We approached the triage nurse with Max in tow. He'd been oddly quiet on the ride. Nothing was thrown, he even kept his shoes on. I wanted it to be unnecessary, and we second-guessed ourselves the whole hour there. We parked in front of the pediatric emergency room. I was shut down inside, feeling nothing, but on the outside, I was the perfect mommy. We approached the triage nurse, and I suddenly realized I didn't know what to say. Was I supposed to say that Max had a “fit”, that was Max called it, or did I say a “tantrum”? An “event”? No one had told me what to say. Dr. E. had said that Max was "ruling in for bipolar". She loved the technical lingo.
First they took our name, and then asked why we were there. “Um, my son has bipolar disorder, and...he's out of control, and his doctor thought we should come.” She smiled kindly, asked for his meds list, and had us take a seat. We got in quickly and were led into one of their special psych rooms, where they can close off the wall, so that there's no access to medical equipment or anything a suicidal child could use to hurt himself. It was room nine, and we spent 6 hours there.
A social worker came to take the history before anybody else. It was a screening, really, which as a nurse I recognize might be necessary, but as a mom...I'm certain that it doesn't matter how many drinks I have per week. My kid was sick, with a biological illness that lives in his head. Probably I was having too few drinks per week. My one to two glasses of sauvignon blanc were not the problem here. But I knew not to joke about things like this, knew that, if I did, the social worker would write it down, write down her concerns that maybe mommy drinks. I got through it, pretending to be solemn and take it seriously. I thought that maybe it I acted like this was normal, it just would be.
We met a nurse, smiling brightly, “how are we doing?”. I didn't say “I'm in the fucking emergency room because my kid has huge fits that are tearing my family into bits. How the fuck do you think I am?”. I said, “fine, thanks for asking”. We met a psych fellow, an Indian woman who mentioned her own kids. Max watched endless episodes of Sponge Bob while Dave and I just stared at each other, silently.
Eventually, it was agreed that Max needed to be admitted to the unit, known as Winchester One, or “Winnie one”. The fellow went over to make sure there was a bed, and to give report on max to the nurses. She came back an hour later, reporting that the acuity on the unit was high, and that, for our child's safety, she recommended that we take him home. She felt that she couldn't guarantee Max's safety if we left him on the unit. There were many older kids acting up, and the staff was stretched thin.
It was impossible, this offer. It was everything we wanted to hear. Of course, she wasn't saying that Max wasn't sick, which was what we still wanted to believe, but we didn't have to hospitalize Max. We were being told to bring him home with us. We were drained, deflated, we'd been wondering if this was the right choice for our 5 year old for hours, now a doctor was telling us to bring him home. So we did. We'd eventually get a bill for the ER visit. We had to pay because he wasn't admitted. Insurance wouldn't cover it. I called and explained what had happened, but they denied that we were told they couldn't keep him safe. They said no one would ever tell us that.
First they took our name, and then asked why we were there. “Um, my son has bipolar disorder, and...he's out of control, and his doctor thought we should come.” She smiled kindly, asked for his meds list, and had us take a seat. We got in quickly and were led into one of their special psych rooms, where they can close off the wall, so that there's no access to medical equipment or anything a suicidal child could use to hurt himself. It was room nine, and we spent 6 hours there.
A social worker came to take the history before anybody else. It was a screening, really, which as a nurse I recognize might be necessary, but as a mom...I'm certain that it doesn't matter how many drinks I have per week. My kid was sick, with a biological illness that lives in his head. Probably I was having too few drinks per week. My one to two glasses of sauvignon blanc were not the problem here. But I knew not to joke about things like this, knew that, if I did, the social worker would write it down, write down her concerns that maybe mommy drinks. I got through it, pretending to be solemn and take it seriously. I thought that maybe it I acted like this was normal, it just would be.
We met a nurse, smiling brightly, “how are we doing?”. I didn't say “I'm in the fucking emergency room because my kid has huge fits that are tearing my family into bits. How the fuck do you think I am?”. I said, “fine, thanks for asking”. We met a psych fellow, an Indian woman who mentioned her own kids. Max watched endless episodes of Sponge Bob while Dave and I just stared at each other, silently.
Eventually, it was agreed that Max needed to be admitted to the unit, known as Winchester One, or “Winnie one”. The fellow went over to make sure there was a bed, and to give report on max to the nurses. She came back an hour later, reporting that the acuity on the unit was high, and that, for our child's safety, she recommended that we take him home. She felt that she couldn't guarantee Max's safety if we left him on the unit. There were many older kids acting up, and the staff was stretched thin.
It was impossible, this offer. It was everything we wanted to hear. Of course, she wasn't saying that Max wasn't sick, which was what we still wanted to believe, but we didn't have to hospitalize Max. We were being told to bring him home with us. We were drained, deflated, we'd been wondering if this was the right choice for our 5 year old for hours, now a doctor was telling us to bring him home. So we did. We'd eventually get a bill for the ER visit. We had to pay because he wasn't admitted. Insurance wouldn't cover it. I called and explained what had happened, but they denied that we were told they couldn't keep him safe. They said no one would ever tell us that.
Sunday, April 11, 2010
Don't Talk to Other Parents
This was advice from Dr. L. He seemed to know right away how sick Max was, how unlike other kids he was. Dr. L. was horrified that we were sending Max to the local Jewish day school. He knew about their history, and was unmoved when I told him about my conversation with the new headmaster. "It isn't going to work," he said, "they are going to extrude him over a long and painful process."
He meant that no one would actually expel our child, they'd just make things so miserable that it became impossible for Max to stay. We really believed that the school wanted to work with us. We had thoroughly explained the issues as we understood them. They told us they would help Max. They had new reading specialists, they said, to help with some of Max's learning needs, and they understood that Max was unable to read social signs. They'd help him, they told us.
Max was really falling apart at home more than at school. His medications needed constant adjustment. The med that got adjusted the most was Seroquel, another of the atypical anti-psychotics. It has an incredibly wide dosing range. Doses start at 50 milligrams per day, and it can be dosed up to 800 milligrams. At fifty mg, most kids are sleepy, so we knew that Max would fall asleep easily at night. Having a definite end to the day almost made the pain bearable, but in November, Max was violent at home every day.
He had been discharged from Prospects, and we didn't have a new psychiatrist yet. We were, as always, on our own. That's another thing that Dr. L. had told us. "No matter what happens," he said, "you guys will always be alone in this". The guy was uncannily, always correct. Max was starting to fit into a strange, predictable pattern. His moods would cycle every day. This is known ass rapid or ultradian cycling, and it far more common in children that in adults. Every morning, at 7 AM, Max became manic. He was irritable, silly, would throw things, including food. He had echolalia, where he would repeat something he heard us say, or something on TV. Or he would clang, repeating something he heard, plus strange variants or related words. So, if Little Einsteins said, "let's go, Rocket!", Max would then say "Rocket, shmocket, in my pocket, what's in my pocket, look a car, it's red, boom!" and throw it across the room at me, often just missing my face, but sometimes hitting me in the forehead if I didn't duck quickly enough.
He'd often calm down just enough for me to get him to school, then get Henry there, and then I'd come home, exhausted, to make several rounds of phone calls looking for help for my son. I'd call psychiatrists, read the CABF website (bpkids.org) desperately looking for help. I was in contact with Dr. L., even though he wasn't really our doctor anymore. I'd pick Max up at 3:30, which was good, because part of the new pattern was depression every day at 4 PM. Max was miserable, hateful, angry, and sad. He hated us, himself, he said he was worthless, and we were even worse. Again, this was accompanied by violence towards us and his brother. It was difficult to keep anyone safe. We were lucky that we had Caitlin.
Caitlin was our babysitter. She was in her 20s, and lived around the corner with her mom and step-dad while finishing her college degree in education. She had started helping us with the kids around when Henry was born, so she'd seen this all develop. She knew it wasn't a parenting problem long before the doctors knew. She came three afternoons a week as my extra pair of hands. I never left her alone with both kids. I knew no one could really handle Max other than me or Dave, but I don't think I could have survived without Caitlin. She could take Henry outside or to his room to play. She helped keep us safe. She could also put Henry to bed while I wrangled Max.
If I could get Max to fall asleep before 6:30, the evening was OK. It meant an early dinner, a strict routine (demanded by Max) of last television shows and medications, sometimes even a shower. but if I didn't get him to sleep before 6:30, we were all in trouble. I sometimes missed that sweet spot, which meant another round of mania at 7 PM. Some friends made fun of us; they couldn't believe how we kowtowed to our son's sleep schedule. But we thought of it as a safety schedule. As things got worse, though, we were unable to control anything; I was forced to use the therapeutic restraint skills I'd learned when working in group homes in my twenties. Dr. L had also showed me how to restrain Max be bending his thumb back and inflicting pain without harm. I never wanted to do that, but had to once when Max said he was going to break Henry's arm.
I called Dr. L and begged for help. He said, "I really don't want to hospitalize him", which, in shrink speak, actually means "I want to hospitalize him". So, we did it. The day after Thanksgiving, we couldn't take it anymore, couldn't keep everyone safe. We talked to Max about it, and he thought it was a great idea. he packed his own bag for the hospital, at five years old. Dr. L. thought this was meaningful, that Max knew he was out of control and wanted help. So we took him to the emergency room at Yale- New Haven Hospital.
He meant that no one would actually expel our child, they'd just make things so miserable that it became impossible for Max to stay. We really believed that the school wanted to work with us. We had thoroughly explained the issues as we understood them. They told us they would help Max. They had new reading specialists, they said, to help with some of Max's learning needs, and they understood that Max was unable to read social signs. They'd help him, they told us.
Max was really falling apart at home more than at school. His medications needed constant adjustment. The med that got adjusted the most was Seroquel, another of the atypical anti-psychotics. It has an incredibly wide dosing range. Doses start at 50 milligrams per day, and it can be dosed up to 800 milligrams. At fifty mg, most kids are sleepy, so we knew that Max would fall asleep easily at night. Having a definite end to the day almost made the pain bearable, but in November, Max was violent at home every day.
He had been discharged from Prospects, and we didn't have a new psychiatrist yet. We were, as always, on our own. That's another thing that Dr. L. had told us. "No matter what happens," he said, "you guys will always be alone in this". The guy was uncannily, always correct. Max was starting to fit into a strange, predictable pattern. His moods would cycle every day. This is known ass rapid or ultradian cycling, and it far more common in children that in adults. Every morning, at 7 AM, Max became manic. He was irritable, silly, would throw things, including food. He had echolalia, where he would repeat something he heard us say, or something on TV. Or he would clang, repeating something he heard, plus strange variants or related words. So, if Little Einsteins said, "let's go, Rocket!", Max would then say "Rocket, shmocket, in my pocket, what's in my pocket, look a car, it's red, boom!" and throw it across the room at me, often just missing my face, but sometimes hitting me in the forehead if I didn't duck quickly enough.
He'd often calm down just enough for me to get him to school, then get Henry there, and then I'd come home, exhausted, to make several rounds of phone calls looking for help for my son. I'd call psychiatrists, read the CABF website (bpkids.org) desperately looking for help. I was in contact with Dr. L., even though he wasn't really our doctor anymore. I'd pick Max up at 3:30, which was good, because part of the new pattern was depression every day at 4 PM. Max was miserable, hateful, angry, and sad. He hated us, himself, he said he was worthless, and we were even worse. Again, this was accompanied by violence towards us and his brother. It was difficult to keep anyone safe. We were lucky that we had Caitlin.
Caitlin was our babysitter. She was in her 20s, and lived around the corner with her mom and step-dad while finishing her college degree in education. She had started helping us with the kids around when Henry was born, so she'd seen this all develop. She knew it wasn't a parenting problem long before the doctors knew. She came three afternoons a week as my extra pair of hands. I never left her alone with both kids. I knew no one could really handle Max other than me or Dave, but I don't think I could have survived without Caitlin. She could take Henry outside or to his room to play. She helped keep us safe. She could also put Henry to bed while I wrangled Max.
If I could get Max to fall asleep before 6:30, the evening was OK. It meant an early dinner, a strict routine (demanded by Max) of last television shows and medications, sometimes even a shower. but if I didn't get him to sleep before 6:30, we were all in trouble. I sometimes missed that sweet spot, which meant another round of mania at 7 PM. Some friends made fun of us; they couldn't believe how we kowtowed to our son's sleep schedule. But we thought of it as a safety schedule. As things got worse, though, we were unable to control anything; I was forced to use the therapeutic restraint skills I'd learned when working in group homes in my twenties. Dr. L had also showed me how to restrain Max be bending his thumb back and inflicting pain without harm. I never wanted to do that, but had to once when Max said he was going to break Henry's arm.
I called Dr. L and begged for help. He said, "I really don't want to hospitalize him", which, in shrink speak, actually means "I want to hospitalize him". So, we did it. The day after Thanksgiving, we couldn't take it anymore, couldn't keep everyone safe. We talked to Max about it, and he thought it was a great idea. he packed his own bag for the hospital, at five years old. Dr. L. thought this was meaningful, that Max knew he was out of control and wanted help. So we took him to the emergency room at Yale- New Haven Hospital.
Thursday, April 8, 2010
I Win
The first helpful diagnosis we got for Max was pediatric bipolar disorder, but it didn't come from any of Max's doctors; it came from my doctor, Fred. In June, when Max was starting at Prospects, I was trying to take care of my basic needs by actually having a physical. I was wiped out. I was an emotional wreck, I'd developed asthma that required three different medications, and any free time I had, I spent wandering around our house. I'd go upstairs, looking for a book I wanted to read. I'd fold some laundry, then turn on the TV, and spend an hour watching an episode of NCIS that I'd already seen. Then I'd wander downstairs and stand in front of the refrigerator, staring for minutes at a time, and finally gulping something down without noticing it at all.
I dragged myself to my internist, patting myself on the back. Fred and I talked for a while about my physical health, he did a thorough physical exam, and then we talked again in his office about the other stuff. He knew Max had some issues, but, like us, didn't really know what they were. He asked if Max had a diagnosis. I took a deep breath, "I don't know...he seems to meet criteria for everything, ADHD, mood disorder, anxiety, oppositional defiant disorder. I don't know." Fred calmly said, "He may have pediatric bipolar disorder. A lot of kids do, and it's really underdiagnosed".
I finally had something I could google. Pediatric bipolar disorder. Which let me not only to the terrific book by Papalos (The Bipolar Child), but also to the Child and Adolescent Bipolar Foundation, where I found a whole community of people like me with kids like Max. I read Bipolar Child in a night, and went to my next meeting with Dr. E.
"Max has bipolar disorder Why do you keep saying 'mood disorder'?", I was furious. By not calling it by a name that meant anything, she held all the power. But with a real name to it, I could do something, read something, help myself. Dr. E responded carefully, bright-eyed and smiling, "Well, let's just call it a mood disorder. We don't need to label him."
A common excuse, the "labeling". It's bull, really, because labels are an important part of communication. Dave once pointed this out to me, "There's this thing outside that I drive. It's made of metal, and it has four wheels. I don't want to label it and call it a car, but it gets me where I'm going." The real issue with labeling is that many of these health professionals don't actually believe in this disorder.
Doctors like Dr. E. suffer from a terrible liberal bias which prevents them from seeing mental illnesses for the biological disorders that they are. Dr. E's clientele is mostly poor, black or hispanic. They are under-privileged by every definition. They are often referred by their school district for their acting out in a public school that just doesn't know what else to do. Dr. E. sees their situations as so painful, she grants them such latitude because they lack social, community, and family support. Their parents are mostly single mothers who work incredibly hard just to keep their families' heads above water, and Dr. E. knows that this has an effect on children. So she imagines that if she can hook those families up with community support and some "parenting skills", the kids will improve and not be so problematic. She's right about some of this: these kids would benefit from better nutrition, more time to play and be kids in a safe space, and from a cadre of adults around them who can guide them to good decision making. But that doesn't mean that they don't also have mental illness with a biological basis. She doesn't want to label them because maybe in a different environment, they could do better. And they're labeled enough, these kids, right?
So what does she do with me? I'm a member of a close-knit Jewish community. I have the support of my synagogue, my kids have 2 sets of local grandparents whom they see all the time, my husband and I have a close marriage untouched by alcoholism, infidelity, or financial stresses. But my kid is among the sickest of these kids, and that shakes her belief system.
So she just blames me, anyway. I give in too easily, or I'm emotionally distant, or both. She confidently states that I have anxiety, which is like telling a four-hundred pound woman that she has a weight problem. I do have anxiety. I have a kid who bites me, and throws things at me while I'm driving. He takes off his seat belt and tries to take his younger brother's seat belt off, too. Every day at 3 PM, he becomes completely uncontrollable, running around in circles, chanting nonsense words, like "api-ceca-gabi" or saying the same word over and over for half an hour. So, yes, I had anxiety. But Max was causing it, not suffering from it.
From then on, from the moment that Dr. E. denied that Max has pediatric bipolar disorder, I knew he had it. I was downright smug about it, in fact. This was something that I could control, research, advocate for. I wished there was a damn ribbon to put on my car, because I suddenly KNEW that this was not a parenting problem.
I dragged myself to my internist, patting myself on the back. Fred and I talked for a while about my physical health, he did a thorough physical exam, and then we talked again in his office about the other stuff. He knew Max had some issues, but, like us, didn't really know what they were. He asked if Max had a diagnosis. I took a deep breath, "I don't know...he seems to meet criteria for everything, ADHD, mood disorder, anxiety, oppositional defiant disorder. I don't know." Fred calmly said, "He may have pediatric bipolar disorder. A lot of kids do, and it's really underdiagnosed".
I finally had something I could google. Pediatric bipolar disorder. Which let me not only to the terrific book by Papalos (The Bipolar Child), but also to the Child and Adolescent Bipolar Foundation, where I found a whole community of people like me with kids like Max. I read Bipolar Child in a night, and went to my next meeting with Dr. E.
"Max has bipolar disorder Why do you keep saying 'mood disorder'?", I was furious. By not calling it by a name that meant anything, she held all the power. But with a real name to it, I could do something, read something, help myself. Dr. E responded carefully, bright-eyed and smiling, "Well, let's just call it a mood disorder. We don't need to label him."
A common excuse, the "labeling". It's bull, really, because labels are an important part of communication. Dave once pointed this out to me, "There's this thing outside that I drive. It's made of metal, and it has four wheels. I don't want to label it and call it a car, but it gets me where I'm going." The real issue with labeling is that many of these health professionals don't actually believe in this disorder.
Doctors like Dr. E. suffer from a terrible liberal bias which prevents them from seeing mental illnesses for the biological disorders that they are. Dr. E's clientele is mostly poor, black or hispanic. They are under-privileged by every definition. They are often referred by their school district for their acting out in a public school that just doesn't know what else to do. Dr. E. sees their situations as so painful, she grants them such latitude because they lack social, community, and family support. Their parents are mostly single mothers who work incredibly hard just to keep their families' heads above water, and Dr. E. knows that this has an effect on children. So she imagines that if she can hook those families up with community support and some "parenting skills", the kids will improve and not be so problematic. She's right about some of this: these kids would benefit from better nutrition, more time to play and be kids in a safe space, and from a cadre of adults around them who can guide them to good decision making. But that doesn't mean that they don't also have mental illness with a biological basis. She doesn't want to label them because maybe in a different environment, they could do better. And they're labeled enough, these kids, right?
So what does she do with me? I'm a member of a close-knit Jewish community. I have the support of my synagogue, my kids have 2 sets of local grandparents whom they see all the time, my husband and I have a close marriage untouched by alcoholism, infidelity, or financial stresses. But my kid is among the sickest of these kids, and that shakes her belief system.
So she just blames me, anyway. I give in too easily, or I'm emotionally distant, or both. She confidently states that I have anxiety, which is like telling a four-hundred pound woman that she has a weight problem. I do have anxiety. I have a kid who bites me, and throws things at me while I'm driving. He takes off his seat belt and tries to take his younger brother's seat belt off, too. Every day at 3 PM, he becomes completely uncontrollable, running around in circles, chanting nonsense words, like "api-ceca-gabi" or saying the same word over and over for half an hour. So, yes, I had anxiety. But Max was causing it, not suffering from it.
From then on, from the moment that Dr. E. denied that Max has pediatric bipolar disorder, I knew he had it. I was downright smug about it, in fact. This was something that I could control, research, advocate for. I wished there was a damn ribbon to put on my car, because I suddenly KNEW that this was not a parenting problem.
Wednesday, April 7, 2010
How Not to Find a Shrink
The new headmaster convinced me that the school could do it. A big, bearded guy with a long career in education, he was exuberant about getting a kid with some issues. He showed me every room in that school, spreading his arms wide, booming "Doesn't it look like we can do everything here? We can do everything but a self-contained classroom." He adjusted his blue and white knit kippah and gave me a goofy grin. I was sold; that was before we knew.
Max's entry into kindergarten was okay. His teacher, Mrs. M., had a quality that Dave and I can't quite describe. Sometimes we meet someone, and we tell them about Max, and there's a look they get; they know what we're talking about. They don't say anything that would tell us that, they don't have to, Dave and I can just tell. Sometimes they say less than most people do when we talk about Max. But Mrs. M. had that quality.
Prospects was part of our weirdo routine. Max's notebook from Prospects traveled everywhere with him now. He had goals for school, goals for home, goals for Prospects. He got points for doing things he was supposed to. He never understood that some rules are the same everywhere. If he wasn't allowed to scream obscenities at home, then that wasn't allowed other places, for instance. max could make no sense of that. He was transitioning poorly. When recess ended and the kids came inside, Max would stay riled up for hours. He couldn't just settle down and listen. Things were deteriorating as October approached, and somehow, Prospects rushed him into a graduation. I know now that September is always a good month for Max. I don't know why, although lots of kids with bipolar have a seasonality to their symptoms. So Max graduated, and we were done. But things were getting worse, not better.
We needed a new psychiatrist. We had been able to continuing seeing Dr. L. because Max was at Prospects. Now that Max wasn't at Prospects, we had no shrink. And Dr. L. had no advice on where to find one. I think he knew that most of them are awful, and that Max was totally out of their league. in an extreme cop-out, he proclaimed, "Max is not a private practice kind of kid". He was right of course. Dr. L. was always right. but my kid needed a shrink.
I called all over. The Yale Child Study Center was going to be seeing kids at Greenwich Hospital, where Dave works. But they didn't know when that might be, and never called me back when I left messages. The Child Guidance Center of Stamford felt that Max was "too sick" for their agency. Thus began an inter-agency battle between Prospects, hosted by the Norwalk Child Guidance Center, and Stamford's center.
I had a hard time understanding that Max was too sick. I mean, they offered psychiatric care, right? To whom? There were un-sick kids who saw a psychiatrist? I couldn't read between the lines yet.
Max's entry into kindergarten was okay. His teacher, Mrs. M., had a quality that Dave and I can't quite describe. Sometimes we meet someone, and we tell them about Max, and there's a look they get; they know what we're talking about. They don't say anything that would tell us that, they don't have to, Dave and I can just tell. Sometimes they say less than most people do when we talk about Max. But Mrs. M. had that quality.
Prospects was part of our weirdo routine. Max's notebook from Prospects traveled everywhere with him now. He had goals for school, goals for home, goals for Prospects. He got points for doing things he was supposed to. He never understood that some rules are the same everywhere. If he wasn't allowed to scream obscenities at home, then that wasn't allowed other places, for instance. max could make no sense of that. He was transitioning poorly. When recess ended and the kids came inside, Max would stay riled up for hours. He couldn't just settle down and listen. Things were deteriorating as October approached, and somehow, Prospects rushed him into a graduation. I know now that September is always a good month for Max. I don't know why, although lots of kids with bipolar have a seasonality to their symptoms. So Max graduated, and we were done. But things were getting worse, not better.
We needed a new psychiatrist. We had been able to continuing seeing Dr. L. because Max was at Prospects. Now that Max wasn't at Prospects, we had no shrink. And Dr. L. had no advice on where to find one. I think he knew that most of them are awful, and that Max was totally out of their league. in an extreme cop-out, he proclaimed, "Max is not a private practice kind of kid". He was right of course. Dr. L. was always right. but my kid needed a shrink.
I called all over. The Yale Child Study Center was going to be seeing kids at Greenwich Hospital, where Dave works. But they didn't know when that might be, and never called me back when I left messages. The Child Guidance Center of Stamford felt that Max was "too sick" for their agency. Thus began an inter-agency battle between Prospects, hosted by the Norwalk Child Guidance Center, and Stamford's center.
I had a hard time understanding that Max was too sick. I mean, they offered psychiatric care, right? To whom? There were un-sick kids who saw a psychiatrist? I couldn't read between the lines yet.
My Macho Problem
By July, things were bad in a way I didn't know existed. Max was doing poorly at Prospects. He did violent things every day, which meant that I had to go there EVERY DAY to have a meeting with Max, Dr. E. and often an additional staff member. these were know as "unsafe meetings".
We did a worksheet together to break down the incident, its results and consequences, and what Max could have done differently. For the first week, every meeting went like this:
Staff: Max, what happened?
Max: I threw all that stuff across the room at Jared.
Staff: How do you think that made Jared feel?
Max: I don't know.
Staff: How did you feel?
Max: I felt like throwing stuff.
Staff: What could you have done differently?
Max: I don't know.
Then Max learned that his answers were wrong. He should have said that Jared probably felt sad or mad or embarrassed. Then he could say that he felt sad or mad. The correct answer to the last question is "I could tell staff how I feel" or, alternatively, "I could take space". Taking space meant going into a large three-sided wooden box in the corner of the room where there was a pillow. They told Max it was a good place to relax, or take a break, or even hit the pillow. Sometimes they'd leave a couple of markers and some paper so that kids could express themselves artistically. Mostly the paper got torn up and the markers pitched across the room.
The only good thing about their summer program was that kids got to go swimming at the Wilton YMCA. That is, unless they'd been unsafe, in which case they stayed in the room and did worksheets about their feelings. Swimming was the only thing I could say that Max liked. He really loved it, but almost never got to go while at Prospects. So I'd take him to our pool club in the late afternoon. It made me feel like a regular mom with a regular kid. But we weren't regular at all.
I told Dr. E. that it seemed not to be working. Max's behavior was getting more and more dangerous, and Dr. L had mentioned hospitalization, so maybe...
She told me things weren't bad enough, with an oddly broad smile. I thought I was at my breaking point, and then felt ashamed about that. If she said this wasn't that bad, then maybe the problem was me. Maybe I had to be tougher. For a mom with a macho problem, this was like a dare. How much can you take, Sam? You think this is bad? He's only five, what's wrong with you that you can't handle a five year old?
Max was on four different medications that summer...Concerta, Abilify, Depakote, Seroquel. He happily swallowed the handfuls of pills I was giving him. I was becoming a pediatric psychiatric nurse, with a patient load of just one.
Meanwhile, kindergarten was approaching. The dog lady had given us the wildly incorrect advice that we just couldn't put Max in public school. They wouldn't know what to do with him, no one would help us. She had us running scared. We'd run to the Jewish day school in town, which had an abysmal reputation for helping children who were imperfect. They were rumored to have no tolerance for children with learning disabilities, behavior issues, or physical limitations. But now they had a new headmaster, and he was going to change all that.
We did a worksheet together to break down the incident, its results and consequences, and what Max could have done differently. For the first week, every meeting went like this:
Staff: Max, what happened?
Max: I threw all that stuff across the room at Jared.
Staff: How do you think that made Jared feel?
Max: I don't know.
Staff: How did you feel?
Max: I felt like throwing stuff.
Staff: What could you have done differently?
Max: I don't know.
Then Max learned that his answers were wrong. He should have said that Jared probably felt sad or mad or embarrassed. Then he could say that he felt sad or mad. The correct answer to the last question is "I could tell staff how I feel" or, alternatively, "I could take space". Taking space meant going into a large three-sided wooden box in the corner of the room where there was a pillow. They told Max it was a good place to relax, or take a break, or even hit the pillow. Sometimes they'd leave a couple of markers and some paper so that kids could express themselves artistically. Mostly the paper got torn up and the markers pitched across the room.
The only good thing about their summer program was that kids got to go swimming at the Wilton YMCA. That is, unless they'd been unsafe, in which case they stayed in the room and did worksheets about their feelings. Swimming was the only thing I could say that Max liked. He really loved it, but almost never got to go while at Prospects. So I'd take him to our pool club in the late afternoon. It made me feel like a regular mom with a regular kid. But we weren't regular at all.
I told Dr. E. that it seemed not to be working. Max's behavior was getting more and more dangerous, and Dr. L had mentioned hospitalization, so maybe...
She told me things weren't bad enough, with an oddly broad smile. I thought I was at my breaking point, and then felt ashamed about that. If she said this wasn't that bad, then maybe the problem was me. Maybe I had to be tougher. For a mom with a macho problem, this was like a dare. How much can you take, Sam? You think this is bad? He's only five, what's wrong with you that you can't handle a five year old?
Max was on four different medications that summer...Concerta, Abilify, Depakote, Seroquel. He happily swallowed the handfuls of pills I was giving him. I was becoming a pediatric psychiatric nurse, with a patient load of just one.
Meanwhile, kindergarten was approaching. The dog lady had given us the wildly incorrect advice that we just couldn't put Max in public school. They wouldn't know what to do with him, no one would help us. She had us running scared. We'd run to the Jewish day school in town, which had an abysmal reputation for helping children who were imperfect. They were rumored to have no tolerance for children with learning disabilities, behavior issues, or physical limitations. But now they had a new headmaster, and he was going to change all that.
Life in Basket C
Dr. L was our first psychiatrist. He seemed surprised that the dog lady had referred us to him He didn't have room in his practice, not really, but was willing to evaluate Max and give us an opinion. We'd later learn that if you find a child psychiatrist who has room in his practice, he probably sucks. Better to see someone without room, and then beg for their mercy.
My husband and I both went to that first appointment, I think. Dr. L. asked lots of the same questions that the dog lady had asked. He was thoughtful, tall, good-looking. A nice Jewish psychiatrist who would meet with Max 3 times, and then meet with us again to discuss...something. I'm not sure I ever knew what to expect. I always felt that I had to be on my best behavior. Proper mommy outfit. Not too much makeup, but not too casual. I had to look like I cared, but not too much. Always hard to tell who they're looking at, the psychiatrists.
He met Max 3 times. The third time ended prematurely, Max ran out, giggling hysterically, crashing through the office, down the hall. I could barely get him into the car, into the car-seat. It was a common site for problems, the car. By problems, I mean...problems. Like taking off his shoes and throwing them at me on the highway. Like taking off his seatbelt, climbing out of his car seat, and grabbing me from behind while we were speeding across the Tappan Zee Bridge. I'd be desperately trying to control him with my right arm while I drove with my left, screaming, crying. Sometime later a preschool teacher asked where Max learned the word "fuck". I told her he learned it on the Tappan Zee Bridge.
But back to Dr. L. He would turn out to be ALWAYS correct. Never wrong. Everything he ever said turned out to be truer than we could have imagined. Not always right away, but eventually. And there were things he said that no one else ever told us, and that we still say to one another to this day. The first one he said when he met with us after those three meetings with Max: "Don't talk to other parents," he said. And he was right. We didn't realize how different we were. We'd been dropped into a cold pan of water, and then the water was brought to a boil, so we didn't even know how bad it was. If we'd been dropped into the boiling water, we would have screamed for our lives.
Dr. L. said Max had a "mood disorder", and we started down a long medication road right there. He gave us an abbreviated version of a lecture he gives to medical students at Yale. I still have my notes from that meeting, and sometimes I even still refer to them, but mostly I've memorized the whole damn thing. We started with a tiny dose of stimulant medication, "just in case" this was "just a really bad case of ADHD". I didn't know that I was supposed to be hoping it was just ADHD. It wasn't.
The next medication was Abilify, an atypical anti-psychotic medication you can see advertised during the 5 AM news. The lonely woman walking in the forest, and then it turns sunny. That's Abilify. In tiny doses, it helped right away. For 3 weeks, life was incredible. Max was manageable, and did what I asked. He stayed calmer, and could process requests. There was no violence, and I imagined that life would be normal. But then it stopped working, and Dr. L. sighed, "I've seen this happen". But none of the drug reps knew anything about this possibility. It was devastating.
Dr. L. suggested that we read The Explosive Child, a book by Dr. Ross Greene, who's at Massachusetts General Hospital. The book isn't about diagnosis, but about managing kids "like Max," who are exceptionally angry, and whose families have to run around in circles to manage them. Using a method called "collaborative problem solving", the book was radical, suggesting that we can choose to stop fighting about all sorts of things, placing many of those things into "Basket C," where we realize that we can't invest time in them. Truly important things are "Basket A". Basket A was about safety...the rare things about which we just have to impose our will against our child for everyone's good. Basket B was supposed to be a place where we started genuine negotiating with your child, in an effort to teach them skills, to help them catch up where they were developmentally lost. What resulted was what Dave called "life in basket C". Max couldn't negotiate anything. He got stuck on an idea, and was totally unable to give it up. He would decide that he needed something....a matchbox car, a certain kind of waffles, and demand that we immediately go to the store to buy it. He could focus on something for days. If we bought it, it didn't help, he just moved on to something else. And if we didn't buy it? He would talk about it incessantly, sometimes raging through the house, throwing every solid object he touched: toys, crayons, chairs. Wooden toys became forbidden in our house, as the walls became more and more distressed with the evidence of our child's rages.
Then Max began going to a summer program called Prospects, allegedly for kids like him. Dave and I constantly called it "Promises", after the celebrity drug rehab in Malibu. Mostly it was really poor kids who suffered from tremendous under-parenting, as well as their psychiatric disorders. I had to sign a contract that I would participate in therapy, and that I'd go to a parent group. I thought it might be helpful. That's when we still had hope, when I thought that I could do what these experts told me, and things would get better. But the experts had already turned on me.
Prospects used a behaviorist model: kids got points and could use them to buy things in the store. No one told me that a behaviorist model is the OPPOSITE of Ross Greene's baskets. Mostly, I think the professionals we came in contact with underestimated how closely we were listening to them. Far from the "non-compliant parents" they were used to, I took it all to heart, hopefully implementing everything. Eventually, the psychologist in charge at Prospects, Dr E, told me that using collaborative problem solving was the opposite of Prospects. Oh. So, I don't know what I'm doing, and I don't know what you're doing, and why does my kid act like this?
Prospects introduced Max to all sorts of clinical lingo that he still uses: he calls other children "peers" and he might describe a child having an outburst as "testing limits". It sounds ridiculous when Max says it, and worse when a clinician is impressed by Max's use of these idiotic words. Prospects also had bizarre lingo unique to their program. When a child starts to act out of line, the staff members would say "That's a prompt". I think it was supposed to mean that the staff was prompting the child to improve his behavior, but I"m honestly not sure. Max knew that getting a prompt was bad, but he could never really understand why he had gotten one.
Slowly, Max moved up their level system...he made it to level two, Hooray! Then he'd throw a marker, or a chair, and be down on "restriction," meaning he couldn't go to the Prospects store and spend his points. Secondarily, that meant two hours rages at home where he angrily tore the room apart when I denied him any points. Points became a new focus of his rage, and his rage only seemed to get bigger as he grew. By July, Dr L and Dr E started discussing something new: psychiatric hospitalization.
My husband and I both went to that first appointment, I think. Dr. L. asked lots of the same questions that the dog lady had asked. He was thoughtful, tall, good-looking. A nice Jewish psychiatrist who would meet with Max 3 times, and then meet with us again to discuss...something. I'm not sure I ever knew what to expect. I always felt that I had to be on my best behavior. Proper mommy outfit. Not too much makeup, but not too casual. I had to look like I cared, but not too much. Always hard to tell who they're looking at, the psychiatrists.
He met Max 3 times. The third time ended prematurely, Max ran out, giggling hysterically, crashing through the office, down the hall. I could barely get him into the car, into the car-seat. It was a common site for problems, the car. By problems, I mean...problems. Like taking off his shoes and throwing them at me on the highway. Like taking off his seatbelt, climbing out of his car seat, and grabbing me from behind while we were speeding across the Tappan Zee Bridge. I'd be desperately trying to control him with my right arm while I drove with my left, screaming, crying. Sometime later a preschool teacher asked where Max learned the word "fuck". I told her he learned it on the Tappan Zee Bridge.
But back to Dr. L. He would turn out to be ALWAYS correct. Never wrong. Everything he ever said turned out to be truer than we could have imagined. Not always right away, but eventually. And there were things he said that no one else ever told us, and that we still say to one another to this day. The first one he said when he met with us after those three meetings with Max: "Don't talk to other parents," he said. And he was right. We didn't realize how different we were. We'd been dropped into a cold pan of water, and then the water was brought to a boil, so we didn't even know how bad it was. If we'd been dropped into the boiling water, we would have screamed for our lives.
Dr. L. said Max had a "mood disorder", and we started down a long medication road right there. He gave us an abbreviated version of a lecture he gives to medical students at Yale. I still have my notes from that meeting, and sometimes I even still refer to them, but mostly I've memorized the whole damn thing. We started with a tiny dose of stimulant medication, "just in case" this was "just a really bad case of ADHD". I didn't know that I was supposed to be hoping it was just ADHD. It wasn't.
The next medication was Abilify, an atypical anti-psychotic medication you can see advertised during the 5 AM news. The lonely woman walking in the forest, and then it turns sunny. That's Abilify. In tiny doses, it helped right away. For 3 weeks, life was incredible. Max was manageable, and did what I asked. He stayed calmer, and could process requests. There was no violence, and I imagined that life would be normal. But then it stopped working, and Dr. L. sighed, "I've seen this happen". But none of the drug reps knew anything about this possibility. It was devastating.
Dr. L. suggested that we read The Explosive Child, a book by Dr. Ross Greene, who's at Massachusetts General Hospital. The book isn't about diagnosis, but about managing kids "like Max," who are exceptionally angry, and whose families have to run around in circles to manage them. Using a method called "collaborative problem solving", the book was radical, suggesting that we can choose to stop fighting about all sorts of things, placing many of those things into "Basket C," where we realize that we can't invest time in them. Truly important things are "Basket A". Basket A was about safety...the rare things about which we just have to impose our will against our child for everyone's good. Basket B was supposed to be a place where we started genuine negotiating with your child, in an effort to teach them skills, to help them catch up where they were developmentally lost. What resulted was what Dave called "life in basket C". Max couldn't negotiate anything. He got stuck on an idea, and was totally unable to give it up. He would decide that he needed something....a matchbox car, a certain kind of waffles, and demand that we immediately go to the store to buy it. He could focus on something for days. If we bought it, it didn't help, he just moved on to something else. And if we didn't buy it? He would talk about it incessantly, sometimes raging through the house, throwing every solid object he touched: toys, crayons, chairs. Wooden toys became forbidden in our house, as the walls became more and more distressed with the evidence of our child's rages.
Then Max began going to a summer program called Prospects, allegedly for kids like him. Dave and I constantly called it "Promises", after the celebrity drug rehab in Malibu. Mostly it was really poor kids who suffered from tremendous under-parenting, as well as their psychiatric disorders. I had to sign a contract that I would participate in therapy, and that I'd go to a parent group. I thought it might be helpful. That's when we still had hope, when I thought that I could do what these experts told me, and things would get better. But the experts had already turned on me.
Prospects used a behaviorist model: kids got points and could use them to buy things in the store. No one told me that a behaviorist model is the OPPOSITE of Ross Greene's baskets. Mostly, I think the professionals we came in contact with underestimated how closely we were listening to them. Far from the "non-compliant parents" they were used to, I took it all to heart, hopefully implementing everything. Eventually, the psychologist in charge at Prospects, Dr E, told me that using collaborative problem solving was the opposite of Prospects. Oh. So, I don't know what I'm doing, and I don't know what you're doing, and why does my kid act like this?
Prospects introduced Max to all sorts of clinical lingo that he still uses: he calls other children "peers" and he might describe a child having an outburst as "testing limits". It sounds ridiculous when Max says it, and worse when a clinician is impressed by Max's use of these idiotic words. Prospects also had bizarre lingo unique to their program. When a child starts to act out of line, the staff members would say "That's a prompt". I think it was supposed to mean that the staff was prompting the child to improve his behavior, but I"m honestly not sure. Max knew that getting a prompt was bad, but he could never really understand why he had gotten one.
Slowly, Max moved up their level system...he made it to level two, Hooray! Then he'd throw a marker, or a chair, and be down on "restriction," meaning he couldn't go to the Prospects store and spend his points. Secondarily, that meant two hours rages at home where he angrily tore the room apart when I denied him any points. Points became a new focus of his rage, and his rage only seemed to get bigger as he grew. By July, Dr L and Dr E started discussing something new: psychiatric hospitalization.
Monday, April 5, 2010
I'm Going to Help You
That's what the first psychologist kept saying. She resembled a troll; less than five feet tall, I surprisingly found myself looking down to talk to her. She almost never wore shoes, only slippers in her home-office, tucked under the side of a large yellow Dutch colonial on a private road in New Canaan. There were images of Golden Retrievers everywhere. Her therapy dogs were always Goldens, she told me It seemed sweet, and almost normal, the therapy dog thing. It made it seem like taking a five year old to a psychologist was a normal thing that normal people did. But it wasn't. And despite the New York-accented nasally "I'm going to help you", I knew it wasn't normal.
She hadn't met Max yet, not when she first said it. We had told her everything we thought we knew. He was impossible to discipline, despite all efforts with setting limits, sticker charts, cajoling. The child was miserable, and he was taking us along with him. He never understood the consequences of his actions, so much so that we doubted that any consequence made sense at all. He had tantrums that would last an hour, but they weren't about anything. Things would be OK, everyone walking on eggshells through our lives, when suddenly the bomb that was Max would go off. He would thrash on the floor so violently that I had to move furniture out of the way to keep him safe, as if he were having a seizure. Our family was functioning in crisis mode, but the crisis never ended.
We put our hope in the psychologists oddly small hands. We endured weeks of testing, piles of forms to fill out; we meticulously described eating habits, sleeping habits, family history of everything from depression to learning disabilities. She spent hours with him, astonished over his lack of desire to be toilet-trained.
She tested his empathy, his I.Q., his understanding of reality, and a wide variety of aspects of his learning. He had tremendous difficulty with spatial relations, which seemed to excite her. The Aspergers Syndrome Diagnostic Scale (ASDS) indicated Aspergers was "Highly Likely". Of course, we didn't know that the ASDS mattered until years later. Literally. Years. Later.
When she told us the results of the testing, she leaned forward as she spoke, desperate to share her findings with us. She diagnosed Max with "Non Verbal Learning Disorder", in which she was an expert. We were lucky, really, because she was going to help us! Many people do not accept that NLD exists as a unique diagnosis, but our troll doctor did. And she just kept smiling, and looking delighted that Max had "NLD", even as she said it was just the worst thing to have because these kids just have no social skills, high rates of depression and anxiety, but, she did assure us, and put in bold in her report "NLD is NOT an autism spectrum disorder". And she just kept saying that she was going to help us. But she didn't.
She sent us home with vague advice and a bibliography. Amazon made loads off Max's "NLD", and still makes annoying NLD book recommendations when we log on. Months later, things were still beyond miserable, getting worse all the time, so she referred us to our first pediatric psychiatrist.
She hadn't met Max yet, not when she first said it. We had told her everything we thought we knew. He was impossible to discipline, despite all efforts with setting limits, sticker charts, cajoling. The child was miserable, and he was taking us along with him. He never understood the consequences of his actions, so much so that we doubted that any consequence made sense at all. He had tantrums that would last an hour, but they weren't about anything. Things would be OK, everyone walking on eggshells through our lives, when suddenly the bomb that was Max would go off. He would thrash on the floor so violently that I had to move furniture out of the way to keep him safe, as if he were having a seizure. Our family was functioning in crisis mode, but the crisis never ended.
We put our hope in the psychologists oddly small hands. We endured weeks of testing, piles of forms to fill out; we meticulously described eating habits, sleeping habits, family history of everything from depression to learning disabilities. She spent hours with him, astonished over his lack of desire to be toilet-trained.
She tested his empathy, his I.Q., his understanding of reality, and a wide variety of aspects of his learning. He had tremendous difficulty with spatial relations, which seemed to excite her. The Aspergers Syndrome Diagnostic Scale (ASDS) indicated Aspergers was "Highly Likely". Of course, we didn't know that the ASDS mattered until years later. Literally. Years. Later.
When she told us the results of the testing, she leaned forward as she spoke, desperate to share her findings with us. She diagnosed Max with "Non Verbal Learning Disorder", in which she was an expert. We were lucky, really, because she was going to help us! Many people do not accept that NLD exists as a unique diagnosis, but our troll doctor did. And she just kept smiling, and looking delighted that Max had "NLD", even as she said it was just the worst thing to have because these kids just have no social skills, high rates of depression and anxiety, but, she did assure us, and put in bold in her report "NLD is NOT an autism spectrum disorder". And she just kept saying that she was going to help us. But she didn't.
She sent us home with vague advice and a bibliography. Amazon made loads off Max's "NLD", and still makes annoying NLD book recommendations when we log on. Months later, things were still beyond miserable, getting worse all the time, so she referred us to our first pediatric psychiatrist.
Radical Jewish Parenting- an introduction to some ideas
What if you never offered your kid an incentive or a punishment? What if every time you wanted your child to do something, you had a conversation about it? What might happen? The "parenting experts" claim it would be chaos. Kids would have no boundaries, which we're told that they need. Kids wouldn't know right from wrong, and they'd never make the correct choice.
Judaism has this concept, or pair of concepts, really. We believe that a person has a yetzer tov (a good inclination) and a yetzer hara (an evil inclination). All people have both, and therefore we are all prone to the pressures in the world which might make us choose good or evil. The Rabbis taught that we must find a way to fulfill our evil inclination, but that it should be channeled. The common example of this is that a violent man should become a butcher, which would help him to fulfill his yetzer hara without doing harm. A person who desires fame above all else should be encouraged to donate money to his community; the recognition he receives for his donations might fulfill his urge for fame while doing good.
I assert that we can appeal either to the yetzer hara or the yetzer tov, and that we should be appealing to the yetzer tov whenever possible. When soliciting money for a cause, the primary method should be pointing out the good in the world such a donation would create. Secondary to that should be the free tote bag.
When we teach our children, we might appeal to their yetzer tov by pointing out the good in what we are asking them to do. I'd like Henry, my 6 year old, to pick up his Legos because it makes it easier for everyone to walk through the room when the toys are clear. I'd like him to help a friend because it's the right thing to do, and makes us all feel good when we can help one another. He does not receive starts on a chart or a sticker for these acts, because that would be appealing to his yetzer hara. Furthermore, if I threaten him that I will take away the Legos, I am again activating the yetzer hara, by inviting him to fight with me.
I discussed this concept with a very nice Modern Orthodox rabbi recently, who felt that external rewards are the only way to get children "in the habit" of doing good acts. He had mentioned, in the course of our conversation, that he is a baal teshuvah, so I had to ask why he ever started putting on tefillin. Did someone offer him a prize? He pointed up, and said "that's where I get my reward". Having proven my point, he continued to insist that children need external rewards, such a small slips of paper signed by a rabbi, to encourage them to help a friend.
This very kind, thoughtful rabbi, having spent years in Jewish education, told me that he'd never heard these ideas, and they were quite radical to him. Thus, radical Jewish parenting.
What do you think? What works for you with your kids? How nervous does it make you to take the whole reward/consequence system out of the picture?
Judaism has this concept, or pair of concepts, really. We believe that a person has a yetzer tov (a good inclination) and a yetzer hara (an evil inclination). All people have both, and therefore we are all prone to the pressures in the world which might make us choose good or evil. The Rabbis taught that we must find a way to fulfill our evil inclination, but that it should be channeled. The common example of this is that a violent man should become a butcher, which would help him to fulfill his yetzer hara without doing harm. A person who desires fame above all else should be encouraged to donate money to his community; the recognition he receives for his donations might fulfill his urge for fame while doing good.
I assert that we can appeal either to the yetzer hara or the yetzer tov, and that we should be appealing to the yetzer tov whenever possible. When soliciting money for a cause, the primary method should be pointing out the good in the world such a donation would create. Secondary to that should be the free tote bag.
When we teach our children, we might appeal to their yetzer tov by pointing out the good in what we are asking them to do. I'd like Henry, my 6 year old, to pick up his Legos because it makes it easier for everyone to walk through the room when the toys are clear. I'd like him to help a friend because it's the right thing to do, and makes us all feel good when we can help one another. He does not receive starts on a chart or a sticker for these acts, because that would be appealing to his yetzer hara. Furthermore, if I threaten him that I will take away the Legos, I am again activating the yetzer hara, by inviting him to fight with me.
I discussed this concept with a very nice Modern Orthodox rabbi recently, who felt that external rewards are the only way to get children "in the habit" of doing good acts. He had mentioned, in the course of our conversation, that he is a baal teshuvah, so I had to ask why he ever started putting on tefillin. Did someone offer him a prize? He pointed up, and said "that's where I get my reward". Having proven my point, he continued to insist that children need external rewards, such a small slips of paper signed by a rabbi, to encourage them to help a friend.
This very kind, thoughtful rabbi, having spent years in Jewish education, told me that he'd never heard these ideas, and they were quite radical to him. Thus, radical Jewish parenting.
What do you think? What works for you with your kids? How nervous does it make you to take the whole reward/consequence system out of the picture?
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