Me and Him

Whose idea was Milo?

Yours. You said our family wasn’t complete.

No, it was yours. You wanted a sibling for her.

 

I don’t understand why that sent him into a delusion, I was just kidding.

I understand.

Explain it to me.

It’s hard to articulate. . . . It’s as if the ground shifts beneath you, and what was your balance disappears.

Like when I make the same joke for 4 days but on the 5th day you take it seriously and feel hurt?

Yes, just like that.

 

He’s under the bed.

I know, I hung out with him there.

Why is he under the bed?

He’s scared.

Of what?

His feelings.

 

How did you get him to climb to the top of the waterfall?

I asked him to explain to me how you win at the Pokemon card game while we walked.

Did he ever take a breath?

No, not once.

Did he stop to appreciate the view?

He did indeed.

Were you bored out of your mind?

No, I wasn’t listening.

 

How did you get him to sleep?

I told him how we would always be together even if he went on a trip without me, or when he grows up and goes to college. Or after I die.

And that put him to sleep?

Like a charm.

 

What did he say?

He said that he’s always crying on the inside.

What did you say?

I said, me too.

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Climb High

My summer with Milo began again a few weeks ago with rock climbing camp.  It was 1/2 day (in the morning) in an industrial nowhere between our little town and the big city near by. Milo’s BFF J was there, along with another friend of J’s.

The upside of this adventure: air conditioning, social but not competitive, physical but not a sensory disaster, free wifi and a comfortable place to sit for me. The downside: massive, overwhelming frustration.

J’s other friend had been rock climbing many times before, as had several of the other campers. J’s other friend was shy and since he and J were carpooling, J was clearly torn between his other friend and Milo. Milo didn’t make it easy for J. Milo’s nervousness increased his volume and his fidgety weirdness. (For Milo’s volume to increase it means he can be heard from the international space station because his everyday voice is just that LOUD.)

The first day started off well. The kids climbed the easy self belay walls. Then, because climbing is hard, brutal even, on your body, particularly your upper body (and Milo’s upper body is a doughy wonder) they take at least two breaks to play games. The first day’s game was . . .wait for it. . . dodgeball. Shit. Milo wanted to play so I let him. He was loving it, and winning, until J accidentally hit him hard in the face with a ball. First came the SCREAMING, then the thrashing, then me running across the padded floor in my nurses clogs to haul his dervish body over to the observation deck. He calmed enough to let loose a paranoid rant about how the world was against him, how bad things only happen to him, how he hates all camps and just wants to stay home with me. All day. Every day. Just the two of us. Forever.

I gave him a snack. I gave him my phone to play on. After 15 minutes of minecraft he went back to climbing and camp ended quietly.

On the second day the trouble came right away. They were moving on to more challenging walls. Milo could not easily find a foot hold or finger hold. He would let go and hang on the belay with his head down, his body limp. Other campers and counselors would shout encouraging words which would make him shout back obscenities. The kids would recoil. To the staff’s credit, they ignored him. Eventually, after innumerable fits of public frustration, he got to the top of one of the intermediate climbs. He was elated. I was a shaky mess. I had hoped to get some work done. I tried. But knowing that everything can go horribly wrong at any minute makes it hard to concentrate.

We went back for the third day.  Milo set a goal of reaching a ledge which lay beyond a part of  the wall that juts out, so maneuvering around it meant the counter-intuitive move of leaning away from the wall itself. Another rant in mid air, swaying on belay. Another successful ascent. And when 12:30 finally came, we left, with Milo cheering and me wiping the flop sweat from my brow.

The week ended with two flawless days of climbing, easy cooperative games, and Milo reaching the top of the hardest climbs his age was allowed to attempt. We both beamed with pride and stopped for cupcakes on the way home.

Climbing camp was a success. He battled his own doubts and his own expectations and he didn’t disappoint himself. The cost to me was time, and wrinkles, grey hair and sweat, like every other parent who accompanies their kid on a challenge. Plus this: the continued resignation my summer is Milo. All day. Every day. The two of us. Forever?

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The Great American Game

I grew up in a sports loving household, with a sports playing father and a sports playing brother, in a city with consistently winning professional football, baseball, basketball and hockey teams.  There was a hugely successful college sports program nearby. The TV in my house was always tuned to a sports event and most of us were glued to it. So it was a bit of a shock when I told my brother that Milo had picked baseball as his sport and my brother groaned with projected misery.

Oh, I am sooooo sorry.

Why?

Have you ever seen kids play baseball?

No, not really, why?

Because it is bor-ing. Unbelievably Bor-ing.  Get some fold-up chairs, a flask and headphones. You are in for a long, hot, dull spring.

He’s right. Little league is torture.  There’s a field of over heated 10 year old boys, attempting to play the world’s trickiest game, that is, when there’s any actual play going on, because mostly it’s wild pitching, scrambled catching and walking, walking, walking. Little Leaguers are distracted, sluggish, uncoordinated and generally disheartened. Make it kid pitch and you have the world’s gloomiest gang of boys with bats. Add to this Milo — impulse control challenged Milo, sensory integration disorder, if something hits me suddenly I lose my shit Milo — and who knows what will happen. (Most likely nothing, except for the sudden bursts of shrill screaming, wild accusations about the ump and bat, mitt and helmet throwing in disgust.) But it was his choice. 

We made him pick a sport. He quit Tai Kwon Do because it demanded to much compliance. Soccer and baseball involved too much running, we won’t let him play football and swimming is too loud and splashy. So, put me in coach. Baseball. He had to wear socks and cleats. And a hat.  And not duck when the ball came at him. And face forward in the outfield. And not break dance or pick and eat mysterious, pesticide-laden grass. 

And he did. He did all of it. At the first practice he struck out and ran into the woods crying. But eventually he connected with the ball and fought back the tears. He didn’t swing in a game until late in the season having calculated that he had a way better chance of walking onto base than hitting onto base. But eventually, he swung. He fielded ground balls easily, but ran AWAY from the fly balls not toward them. Until he managed to stay in place and hold his mitt up, and by chance, he caught a few.

His team had a losing season. He would rage against the injustice and the other teams, but he never missed a practice. We took him to a free clinic sponsored by our local minor league ball team. He stayed the whole three hours, moved form station o station, made it to the final round in the ground ball elimination challenge and even made a friend. 

Of course I had to be there every minute of every practice and game. I had to put on his socks and his cleats. I had to double knot them and take them off. I had to retrieve his mitt from under his bed or the from the crack between the back car seats. I had to keep track of his uniform and remember his water bottle. But to see him play a team sport, to hear him explode with pride and joy when he batted in a run, to watch him hustle down to first base even as he knew he was getting thrown out, to watch him pitch, and catch badly but with conviction and gusto . . .it was worth every ridiculously long, boring, bug-bitten practice. I can’t wait until next spring.

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The Shortest Post I’ll Ever Write on This Blog

On the last day of school, Milo’s Principal resigned.

We got a robo-call. In her sweetest voice she said that she believes the school will go on to thrive. She offered no explanation for her decision. We also got an email that said the same thing.

Of course, I am relieved.

Because I have spent years negotiating Milo’s place in the world, his reactions to everything and other people’s reactions to him, I sometimes worry that my perspective is skewed. Among my worst fears is that I’m now delusional. I don’t want to blame Milo’s extreme difficulty on anyone else. And I worried that I had been doing exactly that to the Principal.  But there is no way in hell that my three phone calls and one in-person visit to district headquarters prompted her decision. Either she’s had enough, or her bosses have.

I’ve been fired. I wasn’t given the face-saving opportunity to resign. I was escorted out of the building. It was a full body take down of my self esteem and my understanding of myself, my abilities, my faults, my effect on people and my priorities. It was awful, and I don’t know if I have recovered. I wouldn’t wish it on anyone, not the asshole who fired me and not on Milo’s Principal.  I actually wish her well.

But make no mistake, I am elated, ELATED that she will no longer be allowed to fuck up my already fucked up kid’s fucked up life.

And Milo? He answered the phone, hit speaker, let her announcement ring around the room, and busted a victory move.

Ace Ventura victory dance

Vamos a la Playa

For the third year in a row, we spent Memorial Day weekend with friends at the beach. Except my daughter didn’t come with us, deciding instead to stay and continue training for an important competition and to go to school on Monday. The district cancelled the holiday in an effort to make up for the excessive snow days. She arranged to stay with teammates and a school friend, organized rides, and packed herself up. She’s like that.

On the drive to the beach, which included traffic and a dinner stop at the world’s slowest burger joint, Milo maintained good spirits and even announced, “I think this will be a great vacation.”

So, collected in the beach house:  me, my husband, Milo, our friends, their 15 year old son, his friend, and their 2 year old son. Removing my daughter from the equation turned out to be a gift. Without the common, yet constant criticism a sibling provides, and without the tricky social navigations and disapproval of authority figures that school provides, the odds of a good weekend were in Milo’s favor. The weather was glorious, he got out of the car on Friday and didn’t get back in until Monday. His room had easy access to the bathroom and its own TV with cable. The kitchen was stocked with his favorite food, including cookies and goldfish crackers.

When Milo wasn’t watching Spongebob or downing chicken and rice he was playing in the ocean with the older boys or reading to the little boy. Playing in the waves is Milo’s glory. It’s not unlike the years he spent in OT, finding relief from his sensory integration disorder. He loves the slam and the rhythm. The sweetness and patience of the older boys made it possible for Milo to lose himself in the ocean for hours on end. Spending time with the little boy gave Milo a feeling of trust and competence. He happily held hands with the little guy as they made their way down the stairs from the dunes to the beach or searched through the house for toy trucks.

And even controlling for every factor that might make Milo feel oppressed or sad or lonely or lost, the weekend wasn’t all good. On the first morning, a large black shark’s tooth washed up at my feet. I clean and showed it off. Everyone lent me their theory on what a shark’s tooth means in terms of luck and fortune, and everyone spent the rest of the weekend casually looking for a shark’s tooth of their own.

Everyone but Milo. Milo took the search extremely seriously.  He was determined to find a shark’s tooth. We took several long walks together down the beach collecting rocks and shells and he scooped up endless bits and pieces shaped like shark’s teeth but never a shark’s tooth. Each false promise drew first his ire and then his deflation.

Why can’t I find one?

It’s just luck Buddy.

Finding one was just good luck?

Yes.

So not finding one is bad luck?

Not exactly.

If I found close to 20 things that looked like they should have been shark’s teeth but weren’t, would you call that bad luck?

Yes.

Well I don’t think it’s bad luck, I think the ocean DOESN’T WANT ME TO HAVE ONE.

I don’t think it’s personal Milo.

Of course it’s personal. Because I NEVER EVER can have what I want. I only ever have bad luck. Most people have some good and some bad luck but not me, ALL I HAVE IS BAD LUCK.

I think we all had good luck with the weather, and the food, the fireworks, and how well we get along. I think it’s been a lucky weekend.

That’s what you think. But it’s not what I think. It’s not what I know!!!

He’s right. What he thinks and what he knows are different from the rest of us. This is how his illness manifests. He doesn’t believe in luck because he’s paranoid and because he takes everything personally. Even when he doesn’t want to take everything personally.  I tried to give him the shark’s tooth but he bellowed, “no, that would be cheating,” as if there’s some code he is not living up to. Even when he expects a great vacation, he can’t let his suspicions wash over or off him. There’s been progress and comfort, maturity and, finally, some buoyancy in Milo’s life this past year, yet he still so often, in his pain, sinks like a vigorously thrown stone.

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Suspended Animation

On a recent Monday morning I sat in the Principal’s office with Milo’s teacher, his Special Ed teacher, the school counselor, two Assistant Principals, the District’s Behavior Expert, the District’s Special Ed Director and the Principal. The meeting opened with one of the Assistant Principals offering a detailed description of the previous Wednesday’s “event.”

The Assistant Principal smiled as she told of Milo losing his patience over the requirements of common core math (a regular occurrence,) leaving his room appropriately, coming down to his “quiet room” which is wrongfully situated across from the Principal’s office for reasons the Principal calls “safety issues” — that Milo’s yelling and screaming frightens the other children; tossing some things around his quiet room which caused the Principal alarm over the possible shattering of the room’s window, so she entered Milo’s quiet room, spoke to him, and proceeded to worry aloud over the window. Milo fled the quiet room, down the hall, hitting his Special Ed teacher, shaking off other adults, all of whom had loud walkie talkies and panicked looks on their faces. He came to rest under a stairwell where he found the metal legs of a broken table that had been tossed there. He threw these at the Principal, causing her to call the Police as Milo was “brandishing a weapon.”

There was some back and forth about details of this account and then I said, “I have Milo’s narrative, which may not be totally reliable, but is certainly as important as any of yours.”

“Yes, please tell us what Milo told you.”

“I can tell you how it FELT to be Milo.”

Milo was mad about math, he expressed this to his teacher, then left for his quiet room. The Principal was standing outside of his quiet room’s door and wouldn’t leave. He asked her to leave, she said she would but she came back. So he threw things, but she wouldn’t go away. So he left the quiet room to get away from her.  He does not remember hitting Miss P, he only remembers “being chased” into the stairwell by grown ups with walkie talkies. He threw things at the Principal to make her go away. She wouldn’t ever go away. He was scared and sad and stayed in the building only because I asked him to not ever leave the building without permission. All he wanted was for me to come get him, which I eventually did.

The “event” transpired on a Wednesday. The Principal suspended Milo for Thursday and Friday. Friday was field day, one of the few days of the year Milo looks forward to.

I cancelled my plans for Wednesday afternoon, Thursday and Friday (which mostly consisted of work and work related meetings.) I told Milo that he was taking Thursday off to rest because I planned to spend Thursday arguing against the two day suspension. I planned to have him back in school by Friday, for field day, so he could participate with his peers and feel like he belonged, and not like a freak who gets chased into a corner and brings the police and terrifies the adults whose job it is to be in charge and keep him safe.

In my frustration and to my great shame, I got ahold of the capable, compassionate District Director of Special Ed and screamed  my lungs out at her. I’m so sorry for that. She’s a professional, and took it in stride (I hope) but I was a quivering mess. I raged about how months ago we had a 4 hour meeting during which my ONLY, ONLY request was that the principal stay away from Milo, how making him miss field day was punishment for her mistake, how he wasn’t using the broken table legs as weapons but as a way to defend himself against the Principal, how the Police were unnecessary and escalating, how this business of a “safety issue” was bullshit, how the entire event was yet another example of people not understanding that Milo is far more afraid of them than they should be of him, that his motivation is PAIN, NOT EVIL. The District Director was gloriously patient with me but not at all soothing. I came so unmoored as to threaten to get a lawyer and actual restraining order against the Principal. Later that afternoon the Superintendent called me. He was reasonable and soothing. He even had a sense of humor. He was a great listener. By then I was calm and appreciative. Our conversation was productive — he had been a special ed teacher for years — but he wouldn’t reverse the suspension.

“Milo, you’re not going to school tomorrow.”

“But it’s field day, I wanna go to school.”

“I’m sorry Buddy, but you can’t go to school.”

“Why not?”

“Because The Principal says you can’t.”

“That’s not fair.”

“I agree.”

First he crawled into a corner, then came the tears and self loathing. “It’s all one big fail. I’m a failure. A FAILURE.”

At Monday’s meeting I tried to explain to the Principal the degree to which I have to undermine her authority  when she undermines Milo’s well bring. I tried to explain the level of anxiety he had all weekend and how hard it was for him to re-enter the building on Monday after being, essentially, barred from it for close to 5 days. I also had to stop the Behavior Expert from lecturing me on what a scary monster my son is.

For years my attitude in IEP meetings has been to be approachable, warm, friendly, cooperative and to get out in front of the definition of Milo, to own it. I’m the first to call him crazy, violent, difficult and scary. I call him that and then I set the limits on what those terms mean.  I’m the one who bears his weight and no one else can tell me how heavy he is.  But this year brought an end to me being easy. In the meeting months ago I put my foot down about the Principal, and at Monday’s meeting I just took the gloves completely off.

A psychiatrist I know tells an interesting story: Years ago when he worked shifts on a psych ward, over the course of 48 hours, the patients would remain the same but the nurses would change. When Nurse X was on, everyone made it through the night with minimal intervention, and when Nurse Y was on, everyone wound up in restraints. His point was simple — the patients were equally crazy or difficult, but the perception of them as such directly effected their behavior and their well being.

During his suspension Milo drew a comic strip. He does this often and is encouraged to write and draw as a form of expression. This comic strip featured a character named MiloMan who saved a bunch of children from a marauding invader who looked suspiciously like his Principal. She was the villain, and he was the hero. The children were grateful and the world was saved.

It’s not that simple. It’s not just a matter of how you approach Milo, because he is crazy and violent and difficult. He has paranoid delusions and can be impossible to reason with. But he is also a 10 year old boy, who, by his own description is “crying inside all of the time.” Why add to his pain? When he’s battling his demons, why not just get the fuck out of the way? So a window shatters, so what? Imagine the rest of his life (and mine!) spent putting back together the scattered pieces of his self esteem.

 

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The Bread of Affliction

Growing up, Passover was my favorite holiday. My parents hosted the first night Seder and the table was actually a mash up of many tables, one from our dining room, one from the basement and one from my grandparents regular card games. There were hand scribbled place cards, homemade matzoh covers and bottomless decanters of grape juice. My extended family was there, as well as my parents’ community of friends — an ex nun and ex priest who were married, my father’s friend from his medical training, Marian, an former college football player and Deacon in the AME church, a man with the most melodic bass voice, that I think he’s the reason I went into radio. There were strays from my mother’s work as an activist and my father’s life as the doc-on-the-block. My maternal grandfather, who had left Russia/Poland for Canada as a child, sat to my father’s left and served, as he did in nearly all of our family matters, as Yoda, the wise, often unintelligible advisor. You knew the meal was going well if he cried from the strength of the bitter herb on his Hillel sandwich. My mother was an early adopter of the Feminist Haggadah even as she spent days in the kitchen with her sister and her friends, preparing the symbolic food and heavy meal.

I sat with my siblings, cousins and the various other children who wandered in at the far end of the table, waiting mostly for the chance to find the Afikomen (a piece of the matzoh that is hidden during the pre meal ceremonies and found after the meal.) Or, to be honest, for the chance to collect the crisp $20 bill my grandfather presented to the finder of the Afikomen. The Afikomen is broken off of the middle piece of matzoh in a stack of three. Early in the proceedings, my father, as the leader, would, with great fanfare, stand, raise the piece of matzoh to the ceiling and bellow, “Behold, this is the bred of affliction” then, grunting ridiculously he would break that piece in two and spirit one half to my grandfather who would hide it.

Well into my disaffected teenage years, that moment, that sentence, that performance, “Behold, this is the bread of affliction” remained spellbinding for me. I’d say it was the drama, or the formality of the word “Behold,” or my father’s playfulness combined with how my grandfather nodded profoundly in response, as if he had been there, in the desert for the 40 year slog and the invention of the no-time-to-rise bread. My father brought the holiday to life, but my grandfather gave it depth.

In college I teamed up with a friend who, decades later, became a rabbi, to host Seders that best resembled a teach-in with wine. We moved the furniture out of our communal house and everyone sat on the floor. The food was passed around family style, our homemade Haggadah was also passed around.  Mostly I remember it as improv, many people riffing on each other, the story, the ceremony, the earnestness, the hypocrisy, the truth.

When I was in graduate school I hosted a Seder in my apartment a few months after my father passed away. Most of my guests were not Jewish but like me they were hungry for ritual and meaning. Again the table was a mash up of borrowed tables, people brought food, wine and their own chair. Again I made a Haggadah and again I lead the service. At the end, when I finished the final reading, I kept my head bowed and thanked everyone for helping me through my first Passover without my father alive, When I looked up I was not the only one crying. After that my Seders took on a life of their own and in my final year, a friend volunteered his large, empty house and more than 30 people sat on the floor and wept with me through the story or loss and liberation.

I haven’t hosted a Seder since.  I’ve been back to my mother’s for Passover, I’ve been traveling, visiting friends and working. Some years I’ve missed it and some years I’ve been grateful to miss it.  With Milo it was something to get through. He wasn’t particularly interested and had permission to sit it out in a different room with a book or a screen. But as he has matured, and as his medication has helped him focus and reflect he’s attempted to participate in more community gatherings. So this year, noting his interest and anticipation, for the first time ever, I dreaded Passover.

On the first night we went to E’s house. I made matzoh ball soup which isn’t hard, but labor intensive. I not only lack confidence as a cook, I’m also rather terrible at it, so I had to concentrate. E’s house is in the woods. It’s airy and open and one of my favorite places. We celebrate the High Holidays with her family, usually in her vast wooded yard. Being there feels festive and comfortable.  Her table was beautifully set and as is customary she gathered friends, neighbors, Jews and non Jews. Her homemade Haggadah is rich with historical analysis and contextualization. She’s a litigator and lobbyist and encouraged debate.

On the drive over i gave Milo an extra dose of Ritalin to help him focus. Milo sat between me and his father. He paid attention to the proceedings, occasionally brandishing a plastic sword and demanding that either me or my husband, “Let (his) people go.” On my other side, sat a young man, B, who was in from California, visiting his parents who live near E. During the leisurely meal B found my daughter looking disgruntled and isolated on the couch and engaged her in conversation. He came back to the table and told me how delightful she was. He’s right, at least with people who aren’t her mother.

A little later B found Milo on the same couch, focused intently on Minecraft on my iPhone.B tried to engage Milo as he had my daughter, but Milo wasn’t interested. So B kept trying, playfully tapping Milo’s foot with his own and suggesting Milo look up certain words he was using. Not long after B returned to his place at the table, Milo was behind us, announcing in his clenched jaw stage whisper, “I don’t like THIS guy.” I turned to my husband, we gathered the kids and left. No reason to push through. We had eaten, participated the bulk of the ritual and the people who knew us were familiar with our sometimes sudden exists.

That night I gave Milo an extra large dose of Melatonin. He takes a small does every night, not to put him to sleep but to help regulate his rhythms. I was worried the evening Ritalin would keep him up. The next morning he was enraged. He stomped into our room before 6 furious with the world. His face looked dark, his eyelids droopy and his skin sallow. He was a mess, a dervish of anger until he was a heap of self loathing and despair.

I kept him home from school and did some research. I had overdosed him, not once, but twice. Too much Ritalin is like too much of any stimulant (duh, idiot mom.)  And too much Melatonin in children can cause epic mood swings, as if Milo doesn’t have epic mood swings  based on his own chemistry alone.

I put aside my to-do list. We walked the dog. We went out for his favorite lunch. We talked about Passover and how to get through that night’s (the second) Seder.

Will B be there?

No.

Will anyone even remotely like B be there?

I doubt it.

Do I have to participate?

No.

What if I want to participate?

It’s up to you Buddy.

I like the plagues.

Me too.

I like the part where the red sea swallows the Egyptian army.

I think that’s a metaphor.

For what?

Suffering.

I’m sorry I made us leave early last night.

I’m sorry I gave you too much medicine and screwed with your chemistry.

I’m glad I didn’t have to go to school today.

That night Milo opted out of the second Seder by hanging on the back porch playing Minecraft or daydreaming on the couch. I was fine with it. The kid doesn’t need a story or a metaphor to understand affliction.

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