cafe mama

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unwanted advice . december 31 . 2012

There are poems that come to me when I am looking for words, poems that do not require forethought. They're automatic, like prayers might be, or Bible verses. "I speak not -- I trace not -- I breathe not your name," is one. "High there! How he rung upon the rein of a wimpling wing," is another.

It is time for new poems. Not that those aren't perfect; rough beasts whose hours have come 'round perfect; stately pleasure dome perfect. I am looking for a new chant to stir men's, and really mostly women's, souls.

But first I should give you some advice.

my three boys 2007
Let me back up. Let me start at the beginning.

In the beginning there was a slithy tove. No. In the beginning there was a woman who said she was Adam Lanza's mother. No. In the beginning there was my son Everett, kicked out of kindergarten for assaulting his teachers (and probably Mr. A too) with kicking and crying and anger.

He was kicked out of kindergarten and then I became another sort of mother. He was kicked out of kindergarten and it was really only October, he was really only five-and-one-quarter, and oh how the unwanted advice began piling up like teddy bears at a memorial, like "I'm so sorry"s at a tribute. Oh, you know, the usual. Gluten and food coloring. More structure, more discipline, less TV, drugs, drugs, drugs. No, no drugs! Just try this special diet. Round and round it goes.

And of course the whole time he was being sent to this other school, called "most restrictive" by the Federal school policies. Most every urban school district in the U.S. has one of those and lots of parents probably never know it exists. Most every school district has IEPs, too, Individualized Educational Plans, which seem only rarely to provide long-term benefit to children and more often provide a reason for neighborhood principals to get the kids away from their safe little fiefdoms.

An IEP sets goals for the children, usually three of them, goals like, "Everett will respond without swearing or insults when asked to do a non-preferred activity 80% of the time," and then every day everyday EVERYDAY the parents get sheets with scores on them saying how their child did, on their goals and also on the classroom goals. You can only imagine how this is used, misused, ignored and obsessed-over by parents and children. You can only imagine how the letters home explaining how poorly one's child has done at said goals can hurt. The system has not been designed to spare feelings. The system has not been designed to relieve anxiety. The system has not been designed for the interests of either parents or children. The system has been designed for the very needs of the system.

A child with an IEP on the EBD spectrum -- emotional and behavioral disorders, anything from ADHD to Obsessive Compulsive Disorder to, more usually, anxiety, depression and oppositional defiant disorder -- which is really only the way fears and anxieties and depression express themselves when met by stressors in some kids -- ok, so these EBD kids, they are so likely to go to prison instead of college that I am sniffling and embarrassed to tell you. 13 times more likely than special ed kids who are handicapped by physical or learning disorders, not (as they say now) "mental health" concerns. Four times more likely than the general population.

I could tell you how few of them graduate at all but I'm sure you're not surprised. You've heard the news stories and now they're all talking about "mental health problems" like they're the new addiction or brain damage or plague. Like they're the new PTSD. Look at those poor kids down there in the pit of despair. Let's get them some mental health care!

my three boys 2008

Oh, puh-fucking-schaw.

I guess I've built up some bitterness.

I usually don't swear here. I don't swear much at home, either, I hear it enough from my kid. Not just one child in my family, but three of 'em, all my boys have IEPs now. Anxiety for the oldest, Asperger's and maybe (probably) (ok, definitely, no one has to hand me a piece of official paper saying so for me to know) sensory processing disorder for the middle, attention deficit and hyperactivity disorder for the littlest. You watch them for a half-hour in grandma and grandpa's living room and it's just obvious, especially the little two. Monroe whirling around and jumping off things like a puppy who hasn't seen his family for a week. Truman not listening, not meeting your eyes, not eating fruit for goodness' sake. (No, mom, not even delicious fruit. Trust me. I have tried.)

But only the oldest really swears. He swears when things are bad, and please know that you would not in all likelihood use the same scale of good/bad as he does. This is still something he is working out.

I think it goes with the anxiety. It all starts with the anxiety. And there is a piece too (they say "piece" a lot in diagnostics, as if we are putting together a puzzle whose shape and size has not yet been determined, might never be, when we find pieces we fit them in wherever we can, sightlessly, I expect a seeing person would find the picture we've shoved together a hopeless, chaotic, hapless mess) -- there is a piece too of not minding whether or not the authority figures hear what he has to say. You could call this boldness, or courage, or "the best defense is a good offense." You could also call this Oppositional Defiant Disorder.

But without the anxiety, would there be a need for defiance? Probably not. Probably (I've analyzed this rather to the ends of the earth) when his brain approaches a problem of embarrassment, or great hurt, or fear of ostracization, or proof of his imperfection, the circuits blow hot and the fan breaks down and he goes a-spinning. That he can get himself under control most of the time now, without violence or destruction of property, is something I would like you all to laud. Hail the conquering inhibitions! Your deep breaths and years of practice have vanquished the evil foe!

But instead, his outbursts, limited as they are to a good fuck-you, fuck-you-all, a well-performed kick meant not to hurt anyone but to demonstrate the object of his frustration (more than likely, one of his brothers), get him a wide swath of criticism and consequence. Lunch is late, in the best case. His little cousins are packed up and sent away, I will not stand for contact with your swear-child! for another year, in the worst.

His dear little cousins to whom he has almost only given love.

I know but I do not know why adults are excused for swearing but children are not. If you were sent home from work every time you swore, well. If you were most of my colleagues in my six-figure jobs, you would have been suspended more than Everett ever has been. In that one startup: The CEO threw a $500 conference call phone across the table, narrowly missing the CFO's head. I was there.

But these stories and more are beside the point. Because I've seen more than my share of high-powered explosive behavior, because I've thrown my own tearful adult tantrums, maybe I'm more conditioned to see my child's tantrums for what they are: him being out of control, not out of his mind with ill intentions. Him acting in defense, not offense. Him communicating in a language they weren't equipped to understand, because of the rules of engagement. Drilled so often on mandatory reporting and warning signs of this and that criminal! evil! wicked! behavior, teachers so quickly jump to the conclusion that fits into a pre-determined descriptor. This is how one can yell "I hate you all!" when he feels his teachers have, in showing concern for another student demonstrated a distinct lack of concern for him, and kick a bookcase, and be labeled with "threatening" and "assault." How he can have it explained to him, how his behavior was "bullying," and how he can not understand at all but in the end be made to sign a long sheet saying he understood.

my three boys 2009

But that is beside the point too. I wanted to give you advice.

My advice comes from a place of love. No: my advice is love.

The first thing I would tell to you, you the parent of a child with an emotional and behavioral disorder, you, the teacher of a child with Asperger's, you, the uncle or aunt or grandparent or caregiver of a child with explosions or unusual temper or inappropriate language or outbursts or even violence -- the first thing I would tell you is to listen.

Listening is the hardest thing.

With my youngest, and even my middle, so often listening would take so long. Hours, or even days. Because they were both speech delayed and even now speak without proper s-blends and with the "d" sound where "k" should be. Monroe would wake up in the middle of the night crying, no, screaming, and this was after language had been developed, and I would ask him what was wrong over, and over. I'd never learn the answer. Thirsty? Scared? Have to go potty? Hungry? No response but tears; I would go back to the beginning. "Do you want a glass of water? Do you want a glass of milk? Are you hurt-are you hurt-areyouHURT?" And he would never nod or shake his head "no," he would just cry and scream and stomp and throw himself out of my comforting arms.

In the end he would take a glass of milk, or go to the potty, or sometimes just fall asleep there on the floor, me sitting in front of him begging for an answer.

Things are better now. Things are always better for the listening, even when the listening brings my own tears before I can hear aright.

Get at their intentions. Not the ones you have attributed to them by default but their real intentions -- which are sometimes for Truman, "I don't know why I did it!" -- and are often just an act, nothing to parse or find blame for. It happened. Time to find a fix.

The things I say again and again, again and again and again, are, "it's not a big deal." "No worries." "I'm not mad." I have to not be mad. If I am mad I have to say that I am sorry, I call my anger "frustration," I say that I am sorry and it was never ever a big deal that he stepped on the iPad, that he broke a glass, that he hopped down off the counter on to my toe. We can buy a new glass. No big deal. Everything will be o.k.

my three boys 2010

The thing you have to do is to love them unconditionally first. Love them first and then find a reason behind their behavior, or if there is no reason skip that part and find a solution. Love love love and keep loving. I want to say, "and eventually it will work," but maybe it won't. I make no promises. I just know that it has helped me.

I have been reading Andrew Solomon's Far From the Tree. He writes of all sorts of children who are different from their parents -- deaf, gay, autistic, genius, depressed. I read his work thinking of my son, who is so very unlike me because he does not fear authority, he does not fear divine retribution. Solomon writes, "A child's marked difference from the rest of the family demands knowledge, competence, and actions that a typical mother and father are unqualified to supply, at least initially. The child is expressly different from most of his or her peers as well, and therefore broadly less understood or accepted. . . Vertical identities [inherited differences, like race or religious group] are usually respected as identities; horizontal ones are often treated as flaws."

And, "Labeling a child's mind as diseased -- whether with autism, intellectual disabilities, or transgenderism -- may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone."

And, "The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy." and "These experiences are starved for language."

What Solomon is saying so often is that we can learn to love and embrace our children for their differences from us, and to treat these differences not as something to be fixed but as something to be lived with differently. Just as a child with dyslexia (which Solomon himself had as a child) needs to be taught how to read with different strategies than other children, not punished for his backwards letters and left inside at recess to copy out the alphabet again and again, a child who is anxious or depressed or angry or suffering from Asperger's needs to be taught to handle disappointmentss using different strategies, and not sent home or kept inside from recess because he is angry or afraid or hugs people when he should not.

Solomon writes, "I take the anti-Tolstoyan view that the unhappy families who reject their variant children have much in common, while the happy ones who strive to accept them are happy in a multitude of ways." And, "Broadcasting these parents' learned happiness is vital to sustaining identities that are now vulnerable to eradication. Their stories point a way for all of us to expand our definitions of the human family."

I have a book's worth of this and I am unsurprised that Solomon's own book is as long as War and Peace. It is very nearly about the same topic. I want to go out quoting all the bits I've highlighted but this sums it up, yes? This: "Understanding how [parents of children with "horizontal" differences] came to think well of their own children may give the rest of us motive and insight to do the same. To look deep into your child's eyes and see in him both yourself and something utterly strange, and then to develop a zealous attachment to every aspect of him, is to achieve parenthood's self-regarding, yet unselfish, abandon." And, "The parental predisposition to love prevails in the most harrowing of circumstances. There is more imagination in the world than one might think."

my three boys today

So that is it, isn't it? First, to look into our child's eyes and see something utterly strange. Then to put aside our own different selves and our own different expectations and our own different plans. The future we held so tight in our fists, so tight that our fingernails left half-moon marks on our palms -- let that go. And in the opening of our hands is the release of all that stress, the societal expectations, the extended family exhortations, the "how will he get along in society?" The shrillness. Let that go and take a long breath and let your shoulders fall and your neck lengthen. Close your eyes and when you open them breathe in love, breathe in hope, breathe in the great wonder that is your own new child, entirely strange and entirely different and entirely himself. This is your standard-bearer. This is your front line. This is the face of your next generation. You are only the storyteller. You are only the one who will take his picture, show his face, and you will tell the world: I am not anyone's mother but his, this unusual amazing unheralded child. And he is making himself every day, and I am riding out behind him with all of my mind open and all of my faith held high.

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Make this a book. I've been dreaming for a long time to make this project into a book. Want to help? Contribute below. A contribution in any amount will subscribe you to an email newsletter (forever), and unless you request otherwise, I'll add your name to the acknowledgements in the book. My hope is to find a large publishing house, but mainstream- or self-published, contributions of $25 will include, eventually, a published book you can hold in your hand. Lots more, here.


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read my previous post . sphere of influence . december 19 . 2012