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.

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.

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 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?

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.