Tag Archives: autism

an element of your condition

20131012-092848.jpgI love you, I say, and you say I love you, too. You stare at shadows or reflections or your iPad, and the structure of your words is hollow. You place your tiny, perfect hand on top of mine, all scarred and veiny. Your bones are so small. I examine them in those seconds, the rippling movements beneath the skin. They remind me of the hummingbird skeletons we saw through glass at the nature preserve in Austin this summer. I could snap them. You are so small for your age. The man at the electronics store today thought you were two years younger. He told me a story about a woman on the news who didn’t feed her toddler. As he spoke, he watched my face.

I tickle you and you roar into my ear. It is too loud, almost painful, but your breath is hot against my skin. When you hug me, you turn away, all vertabrae and elbows. An element of your condition is your discomfort with touching, and being touched. Your eyes are cartoonishly large, beautiful, deep gray blue ocean, and they are always fixed elsewhere. But I am your mother and I want to drink you in. There were years lost when you would scream and cover your ears if my fork made even a tiny clink against my plate. You banged your head against hard floors, slapped your own tear-carved cheeks, compulsively opened and closed doors, flipped light switches on and off. You couldn’t stand photographs. You couldn’t say mommy. But none of that mattered as much as when you screeched, like an injured, angry animal, every time I tried to touch you. I knew not to take it personally. I couldn’t help it.

You are doing better. You are only six. I want desperately to see the future. You are obsessed with yellow, so I try to picture you living in a yellow house, driving a yellow car. I can’t imagine very long. I can only see your round face, your full lips, those enormous eyes, the face of a little boy. Soon, the questions invade. Will you be able to live alone? Will you be able to go to college? Will you be able to have a job? Will you have a partner? Will you have children? Will you have friends? Will you continue to rage and scream? I try and put them away. I count the ways in which everything has improved. One thing at a time, everyone tells you. One thing at a time, I say.

It has been three years since your diagnosis. You have been instructed to tell me you love me. You have been taught to allow me to touch you. Sometimes it feels real. Sometimes I believe you. But I am not so different from any other parent. I always want more and more and more and more and more.

Photo credit: http://menagerieofminds.wordpress.com/

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hitting kids

Lots of parents I know and respect spank their children. But I never have and never will.

I was spanked as a kid. From the ages of 5 to about 16, I was also subjected to a variety of additional punishments. My stepmother made me kneel on rocks holding heavy items, hit me with her high heel shoes, forced socks or underwear, clean and sometimes dirty, into my mouth if I laughed or talked too loudly. I didn’t realize how much this impacted me until I had my own kids. I could not imagine doing these things to them. When I look at my children and I think back on all of this, I get a flush of anger, but also embarrassment. It was humiliating, all of it.

My kids have not been “easy.” Ben screamed nearly constantly from the moment he was born until he was almost four years old. He was always mad, always defiant. He spit on my face. He punched me. He peed on the floor on purpose. There was only one moment during all of this when I thought I might spank him. When he was three, he went into his bedroom and ripped every item from the wall, tipped his bookshelf over, destroyed several of his toys, and pulled the mattress off of the bed. In that exhausted, desperate moment, I took it very personally. I looked into that angry red toddler face of his and I thought about all of the things he had that I didn’t at his age, from his own room, to all of the toys and books, to a stable household. I picked him up and he thrashed in my arms, and I placed him, roughly, on his mattress, which was now haphazardly placed on the floor. I looked down at him and I took a deep breath and I walked out of the room and shut the door. Later, when he had stopped yelling, and I had stopped breathing so hard, I went into his room and took everything he had destroyed away from him, which worked very well. If I hadn’t walked away, I would definitely have spanked him. But I was committed to not hitting my kids.

And then there is Elliott. This morning, I went to check on whether or not he had put his school clothes on, and he was sitting on the couch with no pants on, casually flicking his penis. I asked him to put his clothes on, and he screamed at me, and when I tried to help him, he screamed at me. And then he screamed at me that he wants to be nice but that he does not want to try harder. I feel the anger rise and I let it go and we get through it.

With many years of patience and time outs (which I know are also controversial) and positive reinforcement and redirection and all of those things you read about in books, Benjamin is one of the most delightful and caring people I know. And given Elliott’s challenges with autism, he is making huge strides. Applied behavior analysis has helped tremendously. His empathy and self-awareness grow every year. He tells me he loves me and crawls into my arms and asks me if I am okay. He gets frustrated when he can’t control his impulses and he tries to do better, which is all I can ask.

When I was 16, my stepmother hit me for the last time. I don’t remember what I had done wrong, but I cowered in a corner of the upstairs hallway and she hit me again and again with her shoes. It didn’t hurt very much anymore because I was older. It didn’t stop being humiliating, though. As I curled into myself, I grew angrier and angrier. I was very tall, about 5′ 9″, and my stepmother was 5′ 0″. I watched her face as she hit me and I hated her in that moment. I stood up, and, surprised, she stopped. I was trembling with rage. I felt the largeness of my body in comparison to hers, and, feeling a new sense of power, I looked down on her. Fear flashed across her face for just a second. “What are you going to do?” she asked. “Hit me? You don’t hit your mother.” My feelings were complicated. I felt a twinge of guilt for making her afraid. I didn’t know what I wanted. It might have felt good to hit her, but I don’t think that was it. I just wanted her to stop. For good. I was done. “Don’t ever hit me again,” I said. I stared into her eyes, hard. I believe I would have hit her if she hit me again, but she didn’t. So I just walked away. I didn’t feel good about this, but I didn’t know what else to do.

I realize that spanking is not the same thing as some of the more abusive things my stepmother did to me. But to me, it is the same to a lesser extent. It still makes children feel afraid, humiliated, and powerless. It makes them feel their smallness acutely, and they already are made to feel so small. We romanticize being “old school,” but old school isn’t always better. Reading parenting books, striving to do better, and being thoughtful about the ways in which our actions impact our children is something to be proud of. I am strict with my children. I am consistent. I set firm boundaries. I do not allow them to misbehave. And both of them have challenged me a great deal. If I have been able to discipline these two crazy boys without ever hurting them physically, I believe anyone can. I never want them to feel about me the way that I feel about my stepmother, not even a little bit. And I know that they never will.

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high / low

woman-bipolar-disorder-290x300I cried once during our family vacation to Austin last week. Elliott and I were locked in the “family” bathroom stall of a movie theater. He was screaming at me, threatening to throw his chew necklace onto the bathroom floor. We had been watching Monsters U in 3D. (Side note: I hate 3D for the headache it causes me and the extra expense, but it was all that was playing at that time.) During the climax of the film, Elliott accidentally bit his finger. He roared in response. I threw everything in my lap onto the floor and whisked him up into my arms, as the whole theater seemed to turn and stare at us. He was angry that he had bitten himself. He was angry that I was rushing him down the dimly lit stairs and away from the movie. We were in the last row, and it seemed to take hours. I wasn’t worried about him. I know the difference between his screams of rage and his screams of real pain. I was mortified. I was frustrated. I was exhausted. It had been a difficult day.

We burst out of the theater door, and the ushers stared at this screaming, kicking child and his mother who had forgotten she was still wearing the goddamned 3D glasses. They seemed to find us mildly amusing. In the bathroom, I put Elliott down and caught a glimpse of my ridiculous self in the mirror. “I WANT TO WATCH THE MOVIE I WANT MY GLASSES I HAVE BOOGERS EXCUSE ME I HAVE BOOGERS I WANT TO WATCH THE MOVIE NO THANK YOU NO THANK YOU,” he screeched. As calmly as I could, I told him he needed to stop screaming or we would not be going back. He screamed for several more minutes. I considered my haggard, pathetic face in the mirror. I wondered if the people in the hallway could hear us, the horrible things they must be thinking about my parenting abilities. I felt tears well up but I pushed them away.

He finally stopped screaming. We watched the last two minutes of the movie, which no longer made any sense. He wore my 3D glasses because I couldn’t find his, so the final scenes were blurred for me. As the credits scrolled, he said, “Did you like this movie, Mommy?” as if nothing had happened. I had to put my face against the filthy, cold theater floor to reach far enough under my seat to collect all of the items I had dropped.

We stepped out into the blinding light and overwhelming heat and humidity. He demanded his sunglasses, which I produced from my purse. We walked to the car, the boys happily chatting about the movie. Meanwhile, horrible thoughts ran through my brain. I wondered if he loves me, if he has a conscience, if he will be like this, or worse, when he gets older, when puberty hits, when he is bigger than I am. Will he still kick me and scream at me? Will he hurt me? I thought about the woman I know whose autistic son nearly drowned her. He was 22 and had a tantrum in the pool. She had bruises all over her body.

My thoughts were very bleak, and I was feeling very sorry for myself, and I am not proud. As we walked to the car, my face twisted up and tears started pouring. Ben saw me and got upset. Unlike Elliott, Ben has a surplus of empathy. One kid couldn’t care less, and the other cares too much. I know I shouldn’t have cried in front of him, but I couldn’t stop.

Most of the time, I don’t feel like this. Most of the time, being Elliott’s parent is pretty incredible. Every year, every week, every day he is doing something new, and every accomplishment feels like an occasion to celebrate. Most parents are happy when their kids are potty trained, but when Elliott finally pissed in a potty chair, we jumped around the house, giddy with excitement. I felt like shutting down the streets and throwing a parade. It had taken him nearly 3 years.

This morning, I had to wake Elliott up very early to go to an occupational therapy appointment we had been anticipating for months. Elliott has been doing this for years. The appointments are generally several hours long, and the assessors are sometimes patient and kind, and sometimes not. Elliott is asked to perform task after task, often with no breaks. Balance on one foot, skip, do this puzzle, spin, close one eye, do this with your tongue, wear this cap, go into this tube, say this, etc. During the long, traffic-filled drive, Elliott and I played word games, listened to music, looked for sight words in the billboards. I marveled at him. Most kids don’t have to do the crap he has to do, and he is generally so amazing about it. During the assessment, he listened well and tried his hardest. It was over after 2 hours, and he was allowed to play for a few minutes while the therapist discussed the results with me. As he laughed in the other room, she told me everything that is wrong with him, and there were a lot of things. My face grew warm and it became difficult to swallow, but I pushed it away.

I cried as quietly as possible in the car as Elliott sang along to the Hairspray soundtrack. Somewhere inside, I already knew the things she told me, but it didn’t make it less difficult to hear. I took him out to lunch, and as we waited for our food, we played Rock, Paper, Scissors, and he cheated, like always. Then, he grew serious and said, “I love you, Mommy.” He almost never says this unprompted. He was immediately silly again, doing crazy dances to the music playing over the restaurant speakers. I watched him and wondered if he knew that I had been sad, if he was trying to make me feel better in his own way. Who knows.

My highs are a little too high and my lows are a little too low, and that’s how I’ve always been. Maybe it has something to do with my mother’s bipolar disorder. Or maybe that’s just what it’s like being a parent of a kid with special needs. Maybe it’s a little of both. In any case, after some time alone, during which I chainsawed some vines outside and bought a cute new dress, I felt so much better.

My friend Lashawn reminded me of Elliott’s epic tantrums last summer. He would scream and rip away his shoes and clothing, throwing each item in our direction, his face angry and red and tearful. Once naked, he’d throw his body around, slap his own cheeks, writhe against the rough carpet. This would go on for 20 or 30 minutes. This was his response to our first family vacation, to Portland and San Francisco. This went on for weeks, nearly the entire summer. I had actually forgotten about it, maybe because I wanted to. This year, he whined a little and had one major tantrum (fully clothed!), and now he is back to normal. He threatened to throw the necklace, but he ultimately put it back on.

Things still need to get better, but I need to remember how things keep getting better.

Photo credit: http://www.basicspine.com/blog/bipolar-disorder-treatment/

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the evidence

We take a lot of photos, and they mostly end up on our phone, on our computer, on Facebook. We rarely print them out to hang on the wall or enclose in a physical album. Most of the time, we forget about them. Today is Elliott’s birthday, so I thought I’d try to find a baby photo to post on Facebook. I scrolled through iPhoto, way back to Elliott’s 1st birthday party. Elliott was wearing a silky blue “1st Birthday” crown with a matching onesie. He didn’t look upset, really. It’s something closer to alarm, and it is in every photo. Even in the few in which he smiles, his, wide, worried eyes don’t match his curving mouth. He slept most of that day. He tasted his first cake, and then he went to sleep. In fact, he slept for nearly six hours, which was not normal for him. We hadn’t gotten the diagnosis of autism yet, but I knew something was wrong. All of the photos from that day reveal a beautiful and confused little boy, held by a depressed and overweight mother. This was a hard time. The photo album before Elliott’s First Birthday is Ben’s First Trip to Disneyland, during which the sensory processing problems we did not know he had, coupled with his severe language delay, reveal an overwhelmed and miserable little boy. Not the trip we had envisioned. This was also a time, unfortunately, during which I felt it was completely acceptable to wear a do-rag out in public, even to Disneyland. And then to be photographed in that state. These were desperate times.

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Elliott’s first birthday

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the decidedly unhappiest place on earth

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me. do-rag. Disneyland. not okay.

Last year, we sang happy birthday to Elliott, tentatively gauging his response. Would he be overwhelmed? Would he want any cake? We created a “safe” room for him to retreat into, with his favorite movies and music videos playing on loop. He used it once or twice, but not much. He had a friend over to celebrate, a huge first for him, and they played together the entire time, pausing for hugs and smiling together for the camera.

This year, he’s been talking about his birthday for weeks. He helped plan it. He invited two friends from school to a small party at the local bowling alley. He chose where he wanted to go to dinner. He jumped into our beds this morning, excited for the day to come. Ben made him a present and played Happy Birthday for him on the piano. There will be cookies at school, and cupcakes at dinner, and there will be new photos, too. He will smile in the photos, and this time his smile will match his eyes, because every year, he is happier. Every year is better. And I know how fortunate we are for that.

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inheritance

brainfromplanetarous

My kids can pretty much forget about inheriting any material wealth. Ryan and I both have MFAs in creative writing. In fact, they’ll be lucky if they don’t inherit any student loan debt. It’ll be an exciting race to the grave to pay those off. My talented friend Anthony has a funny and honest blog called My Gay Mom. He posted a couple of days ago about he and his wife’s decision not to have children because he doesn’t want to pass his bipolar II disorder onto them. This hit pretty close to home. Our first kid, Ben, had many developmental delays. At 20 months old, he could recognize and say every letter in the alphabet, but he couldn’t say “Mom.” He had obsessive tendencies, like lining up Tupperware containers for several hours at a time. He also had sensory processing issues. He had to sleep with paper towels pressed against his cheeks, and would crumble them into tiny balls every night. He couldn’t stand amusement parks or crowds. He didn’t truly begin talking until after he was 3 years old. A lot of that has fallen away, but he still gets some speech help, and it is clear that like Ryan and me, he has obsessive compulsive disorder. It is very difficult to watch your child suffer what you have suffered. You give him tools to try and help him manage it. You read books. You seek the help of professionals. But nothing takes it away.

We were certain things would be less difficult with our second child. The day he was born, it was clear we were naive. In fact, the very next day, Benjamin came down with the stomach flu. Elliott had severe jaundice and needed to be hospitalized. Then he had severe digestive problems, severe ear infections, severe sensory processing problems. A severe speech delay. He was ultimately diagnosed with autism. There was a period of three years that were almost unbearable.

Ryan and I have a genetic predisposition to have children who struggle with the things that many kids and parents never have to worry about. I’m not complaining. What I am saying is that sometimes it is difficult to know that we are the ones who gave these struggles to these people whom we love more than any other people in the world. And it is difficult to help them navigate through situations that we still have trouble navigating through. Of course, we have gotten better at understanding and managing our disorders as we’ve grown older, but put me in a crowd of people on a busy day at Disneyland, and watch me disintegrate. Still.

And now we’ve given a combination of our strange brains to our children. That is their inheritance.

Having children isn’t really a practical decision. One day, my uterus demanded babies, and we simply did as it commanded. We painted a room, and put a crib and lots of other baby-sized things in it, and I felt a tiny human grow and press against the inside of my body. It’s a terrifying and incredible process. We read some books and made some plans, and almost none of that prepared us for the actual experience. Now we have these extraordinary boys, and, like every parent, we watch as the combination of our strengths and flaws takes shape in them. I hope that we have given them more good than bad. I hope that we can teach them to, even on the very worst days, look up from whatever they struggle with and see that there is so much more.

Photo credit: http://www.monsterbashnews.com/pics/brainfromplanetarous.jpg

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more than just fingernails

Elliott has long, dirty fingernails a lot of the time. I cut them no more than once per week, no matter what. When they get long and gross, it bothers me not just when I see them, but all throughout the day. I think about it when I wake up, at work, over dinner. It sounds like I’m exaggerating, but I am not. I used to judge people whose kids had long, dirty fingernails, and I guess I still do. So I know that some people see his nails and probably judge me. But cutting Elliott’s fingernails is one of the things I most hate to do in my life. Here is how it goes. I tell Elliott about 30 minutes in advance that it is time for the weekly trim. We read a social story that I wrote for him on PowerPoint on my laptop. The story is called “Elliott, It’s Time to Cut Your Fingernails!” The exclamation point tries (and fails) to instill a sense of lightheartedness. The story features photos of him, me, nail clippers. It gives strategies for relaxing during the process. Count to 10. Breathe. Sing a song. He loves the story. “Read it again, Mommy,” he says. So we do. Finally, I tell him the time has come and that when we are all finished, he will get a fruit snack or a lollipop. He seems prepared. He seems calm.

But as soon as I sit him in my lap and he catches the glint of the clippers, he begins twisting out of my arms. “I have to go potty! I want a treat! I don’t like it! No! I have to go potty! I want a treat! I want daddy!” and so forth. I have cut both of the boys’ nails since they were born, so it is just us two, and sometimes that makes me sad. I don’t want to be the one inflicting one of the worst routines in his life on him. He kicks me. He begins sobbing. He writhes and screams. I eventually wrap my legs around him and angle my body such that he cannot move his limbs. “Get me out! I can’t move!” he screams, and I feel abusive. My heart beats more quickly. As he trembles and cries, I try to block it out and do the work. I cut the nails, one by one. It is an excruciating, slow process. Sometimes it takes twenty minutes. The toenails are worse than the fingernails. When we finish, his face is smeared with snot and tears. I hug him deeply and whisper I am sorry and that I love him and he cries and heaves into my chest until eventually he calms down and begins breathing normally again. He doesn’t normally enjoy long hugs, but he has been traumatized, so this hug will sometimes last five minutes. Suddenly, he stands up as though nothing happened, the tears already disappearing from his eyes. He touches the wet splotches on his face with curiosity, seeming almost surprised to find them there. “Fruit snack?” he asks, and I give the tiny package to him. He devours the fruity globules as though nothing ever happened.

Last year, there was a period of several weeks when the preparation and the social stories and the treats all worked. No screaming. Minimal fidgeting. And then…it just started being awful again.

Elliott is doing so well. I have no business complaining. He’s doing great in school, he has friends, he plays well and gets along with his brother. His speech is improving rapidly. He is getting bigger and stronger. He is happy. He is confident. He is smart. He is funny. He is adorable as hell. When I am cutting his fingernails, though, that all fades away. Something is unmistakably wrong, and nothing I do seems to fix it. He is hurt and crying and trying to escape me. He screams for me to stop, stop, stop. In those moments, I am reminded, acutely, of what autism looks like. Here I am, it says. You cannot ignore me. The fingernails become more than just fingernails. Then we do it again the next week.

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the screamer

Ben and Ryan write a comic book series together. Ben is Art Man, who draws what he needs in a pinch. Elliott is The Screamer, who screams so loud he disables his enemies. It is an inside joke. Sometimes it’s funny and sometimes it’s not. The boy has screamed more than most other boys I know since he was about 14 months old to his present age, almost 5 and 1/2. It used to be for hours and hours, literally 6 to 8 hours per day, and I would dream of escape to the grocery store, the appropriate hum of the lights, the cereal boxes organized just so, my fellow shoppers avoiding eye contact, the soft “hello” of the checker, everything so civilized and sane.

This boy has come far, and he no longer screams for hours each day. Mostly, the screams are whines now, and he has more words and I can understand him more and more, so less frustration. Still, there are days where he will scream an hour straight, where he will strip his clothes from his body, throw his tiny orange sandals at my face, rip my hair. Sometimes I blame it on the autism. Sometimes I blame my parenting. I am extremely ashamed of this, but sometimes I wonder if he simply doesn’t like me, or if he will one day be a terrible person.

We are not supposed to think these sorts of things. I hate that I sometimes think these sorts of things.

He sometimes screams so much that I just go numb. I can feel the people in the museum or on the street or in the store staring at us–he writhing in my arms, wrenching his body away from mine, eyes filled with tears of rage, me, juggling his unpredictable limbs, attempting to both ignore him and prevent him from injuring himself. He recovers quickly, as if it didn’t happen. He skips away and plays with bubbles, and laughs, too loudly, the tears still in his eyes. I don’t know if I recover. I think each round takes a little something from me. But it doesn’t matter. We move forward.

This morning, he comes into my room and touches my face with that delicate hand of his, with those long, slender fingers. He says, “Good morning, Mommy.” He politely asks me for juice, for Chex, for vitamins. Eye contact is still difficult for him, even with me. It is there, it is improving, but it is fleeting. I ask him for a hug and he kind of touches his forehead to my rib cage. Most hugs are elbows and leans and fidgets. Occasionally, when he is very tired or very sad, I get that melting into your body hug that I crave.

Of course, I am grateful that he even lets me touch him, as he didn’t used to. Of course, I am grateful for all of his strides, for his intelligence, for his humor, for everything that he has given to me. Of course, I know he is not a terrible person. He is just a boy who sometimes struggles just as I sometimes struggle. There is no lesson here. As I have said, we move forward. I hope the screaming stops soon.

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mindfulness

Last night, Ryan and I rolled our mats out onto the carpeted 2nd floor of a freshly stuccoed behavioral health clinic near our house. The lights overhead are fluorescent and there is a constant rumble of air conditioning—it is always too cold, as it tends to be in these types of buildings. On one wall, there are several poster-sized photos of the clinic’s employees, under the phrase “Teamwork.” The employees wear toothy, gleaming, teamwork-y smiles and bright, solid polo shirts. These overly happy, middle-aged white people are posed in an assortment of humorous positions—back to back with arms crossed, and even in a pyramid. When I look at the photos, I imagine the details of the pyramid formation, knees digging into quivering, doughy backs, a photographer nervously clicking. The idea seemed hilarious and harmless, but there’s been a violation; the intimacy is forced. It is uncomfortable to think about.

Hugh, our leader, a tiny Irishman with a heavy brogue, a receding hairline, and exaggerated, almost cartoonish, facial features, tells us to lie down. He leads us through a series of movements, simple yoga poses and stretches, and tells us to breathe and feel our abdomens rise and fall and not to release so far that we are no longer being mindful. Mindful. That is the word of these last few weeks in this class. “Breathe,” he reminds us, constantly, and then he inhales so deeply and exhales so dramatically that I am a tiny bit jealous. I want to breathe like Hugh.

Ryan and I are fascinated with him. In our weekly meetings, he drops hints about what his life used to be like before he discovered mindfulness. “I used to live on Weetabix and adrenaline,” he says, and god I want to know what that means. He used to drink excessively. He was a journalist. He’s seen war. But he never elaborates. “What do you think?” he always asks. After we practice our yoga, we sit in a circle and Hugh talks to us about the past week. I feel an irrational urge to please him. He asks me if I did my yoga and quizzes us about the body’s reaction to stress and I want to tell him the right answer. When he looks at you, he twists his mouth and furrows his forehead and stares intently. He is listening in a way that people rarely do and it is unnerving, and almost exhilarating. The meetings take place every Wednesday between 6pm and 8pm, so we are always hungry, but we can tell that Hugh frowns upon eating during his class, even though snacks are made available. He allows us a five-minute break, during which I quickly gulp down an oatmeal cookie and some green tea, returning to the circle empty-handed. I do not want to disappoint him.

We are in week 4 of an 8-week autism study about stress and parents of children with special needs. Parenting is a stressful job for anyone, we were told by the doctor conducting the study, but parents of children with special needs have much higher levels of stress and therefore suffer increased health problems, including higher mortality rates. I know that I have a problem with stress, and I can’t blame my children for that. It’s always been this way. Of course, as I have gotten older and my responsibilities have grown, my levels of stress have increased. I have so many obligations to so many people and much of the time I feel as though I’m disappointing everyone, doing a sub-par job in every area of my life. I do not need to be told that this manifests physically—I get sick and can’t sleep. I feel knots of pressure in my shoulders and neck. Worse, I get irritable with the people who love me the most. I run regularly, which helps, but not enough. So when I heard about this study in January, I signed us up.

The first night of the study, we went around the room, introducing ourselves and explaining why we were there. Many of the parents are dealing with the same sorts of problems Ryan and I deal with—balancing our obligations, managing the particular uncertainty that comes with raising a child with special needs, feeling as though we are failing. One of the women started crying, which made several of us cry. We recognized something in each other. Hugh stared back at us and listened. Then he told us to lie on the ground, our calves propped up on our chairs. The room was hot and crowded. My arms rubbed up against the stranger next to me. Hugh instructed us to close our eyes and spent several minutes asking us to think about our bodies while we “noticed” our breath. I wanted to get the hell out of there. Panic started to rise up into my chest. I began formulating a to-do list. The trunk of my car needs to be cleaned. I need to put my clothes away. I need to pack Ben’s lunch. I do not have time for this. I do not have time.

We were given a notebook and a cd with Hugh’s voice on it and told to do this “body scan” every night. In the past weeks, he has given us many other exercises to help us be mindful, or aware, of what we are doing, what we are thinking, the sensations in our bodies. I have struggled with my own resistance against this. I do not like to dwell. I do not like to sit in a circle with other people and talk about it. I like to push it away and move forward and knock down whatever is in front of me. Even though it can be exhausting, a part of me likes to be in “fight” mode, even when I don’t need to be. There’s that Avett Brothers song that says “Ever since I learned to speak/ I used all my words to fight/ with him and her and you and me/ but it was just a waste of time.” Ryan says that reminds him of me. I am starting to realize that while this has served me well in many ways, while this has helped me to survive, it is not good for me and it is time to stop, or at least to try.

It is easier to be cynical and to make fun of the photos on the wall or to be annoyed with that one parent who wears boots with her sweatpants and talks about how her diabetes makes her have to pee all of the time. But that doesn’t get me anywhere. It helps that Hugh can be funny and that I can tell he’s been through some dark places. So I am lying down as many nights as I can, and I am listening to Hugh’s voice telling me to notice my toes and the spaces in between, to feel the sensation of my breath as it enters my body, to notice my thoughts and allow them to pass. I am giving it a chance, and I think it is beginning to help.

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projectophile

\ˈprä-JECT-oh-fahyl\ (noun) 1. A lover of projects, especially those derived from scavenged materials and made more beautiful through paint, thread and sandpaper.

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Another angry woman

Thoughts and rants from another angry woman

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Faulkner said, kill your darlings. I say, put them on the internet and let strangers read them.

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This is my blog. I write a lot about autism, raising boys, and my own alcohol consumption. I also tend to cover topics like poop and toothpaste. You've been warned.

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Daniel Nester

writer, teacher, husband, dad, Queen fan, inappropriate, dilletante flâneur, Shader

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