Ringing in spring

Garvin girls on TowniesMargaret marches through her dining room and appears to ignore us. I’m sitting around the table with my parents, Margaret’s caseworker and two staff members. This is her annual assessment meeting and the first time I’ve attended.

With the caseworker leading the charge, we talk, among other things, about Margaret’s life skills, her health, her social life and her ability to make choices.

Margaret wheels around and comes back through the dining room, this time looking at me out of the corner of her eye. I haven’t seen her since last fall. I’ve missed her, but I know better than to try to hug her.

This meeting was scheduled for two weeks ago on a Monday. My mother tried to explain to the caseworker that Mondays were not good. On Mondays, Mom picked Margaret up for coffee and dinner at my parents’ house. She had been doing this every Monday since about 1991 — give or take about 1,300 Mondays.

The casework thought it would work out anyway and suggested they give it a try. When everyone convened for the meeting, Margaret looked at all of them, said no, put on her coat and went out to Mom’s car, where she sat waiting to be driven to coffee and dinner at my parents’ house.

We’ll chalk that up as a victory for her ability to make choices.

Margaret doesn’t like change. She doesn’t like people in her space for very long. Most of all, she doesn’t like being talked about in the third person.

But this day she deals with us sitting in her dining room for almost two hours.

When it’s time for us to leave, she’s clearly relieved. She lets me hug her now and even smiles. Encouraged, I ask her if she wants to go for a bike ride the next day with me. She shakes her head, her eyes wide, looking stressed, as if I’ve suggested something just terrible. How could I ask her something like that, her body language says.

“No thank you, Eileen!” she tells me and retreats a couple of feet.

I realize my mistake. There are too many people in the room and she’s still processing everyone being here. She can’t possibly think about tomorrow right now because she’s dealing with us. I squeeze her arm.

“Don’t worry about it,” I say. “I’ll call you in the morning. If you want to go, great. If not, that’s okay too.”

She doesn’t say anything. I leave with my parents and the next day, before I’m finished with my coffee, Margaret has had a staff member call to confirm I’m coming to pick her up at 10 a.m.

She hadn’t ridden her bike since last summer. She was out of shape. Nobody there to take her and then all that snow. Would she do OK on the hills, Mom wanted to know. Could she manage the narrow ramp at the trailhead or would it be too much for her to handle?

I say I think it will be fine.

I pick her up, drive to the trailhead and unload the bikes. Without waiting for me, she buckles her helmet, grabs her green Townie Cruiser and takes off up the ramp and down the trail.  I laugh and hurry to catch up.

My sister rides in front of me, her tires bumping over cracks in the trail. Spring is late and my hands are cold. Margaret doesn’t seem to notice. She turned 50 last week, but her posture, balance and confidence on her bicycle are the same as ever. We could be little girls again, riding our matching purple Schwinns with flowered banana seats and handlebar tassels around the neighborhood.

There goes Margaret, I think to myself as she rides ahead of me. She passes under Ponderosa pines, moving in and out of their shadows and back into the sunlight. She dings her bell, and I know it’s just because she likes the way it sounds. She dings it again, and again and again.

There goes Margaret. She’s got this.

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“How to be a Sister” chosen as a Kindle Book of the Month for February

My publisher just let me know that Kindle has featured “How to be a Sister” on its Book of the Month list for February. Please pass it along to anyone you think might be interested in the story of the hilarity and heartbreak of growing up with a sibling with autism. And you can’t beat the price: 99 cents!

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The kids are alright

I’ve been awake for a while when I hear the bedroom door down the hall slam for at least the fourth time. Before that, thudding feet across the thin carpet, a body, not petite, heaved over the mattress — its ancient springs crying out in complaint. Whispering, a wild peal of laughter and then the slam of the door, rattling the 100-year-old knob. I hear Margaret’s voice two doors down, choked with mirth: “You’re not Uncle Michael!” And then she laughs loud and long to herself in the darkness.

I’m exhausted, but as I open my eyes to the darkness, I pray to the sweet Baby Jesus for morning. Because at least then, this hellish night with my big sister Margaret and her autism, the first such night in a decade at the family lake cabin, will be over.

Some hours later, my older brothers and I slump around the dining room table like shipwreck survivors. Outside the large picture window, the September sunshine dances across the dark green surface of the lake. Small waves race up the beach, darkening the sand. My eye is drawn to the pair of Ponderosa pines towering over the world at the foot of the dock, and I think how I’ve lived a fraction of their 400 years. They are part of the reason the view seems timeless, hardly changed in the four decades we’ve been gathering at this old lake house in Idaho. But what has changed is that we have all grown unaccustomed to and far too old for the sleepless night we’ve just endured.

I curve my hands around my coffee mug, comforted by its warmth. I know without looking that I’m puffy-eyed and pale. Mike cradles his face in his hands. Larry’s hair, thick as ever, stands on end like Radovan Karadzic’s.

“I slept like a log last night! Said nobody on the second floor,” he chirps. Mike snorts, and I laugh so hard I want to cry. Ann, the eldest, looks amused. She also looks rested. She slept downstairs, as far from Margaret’s nocturnal shenanigans as one could get.

Margaret, though, doesn’t say anything. She’s waiting patiently for breakfast. Sitting there with one finger hooked through her mug of hot chocolate, her head leaning on one hand as she watches our mother fry bacon, she’s a picture of calm. You’d never suspect that she’d disrupted our sleep last night, for our collective childhood, and well into the first 30 years of our lives. Unless you knew her.  And the last 24 hours have reminded us that yes, we do. Boy, do we ever know Margaret.

We were five children born in six years. Margaret came second, and was diagnosed with autism at age three. This was 1970, and the affect it had on our family was devastating. When I read stories about autism today, it seems to have some kind of social context. People know what it is and how it’s treated even if there is still no known cause or cure. It’s generally understood that autism, a so-called spectrum disorder, presents itself uniquely in each person. Everyone knows someone with autism, or knows someone who does. Given that some estimates say it affects one in every 100 children, it’s easy to see why the word autism is understood, unlike when we were children and well-meaning adults gently corrected me; surely I meant my sister was artistic. The fact that autism is more commonly recognized, I can only hope, helps soften the blow for families now.

In my family, autism was a hammer. Our childhood was dominated by Margaret’s limitations and, more significantly, her frustrations. Unable to communicate her anxieties or questions, she would quickly escalate to screaming and throwing herself on the floor. Her magnificent raging could last for hours. When she was a little girl, it was frightening. When she hit puberty, it was terrifying. My parents inevitably took sides — Dad angry and Mom doing damage control, while the rest of us stood in the background, bewildered and scared. Back then I thought Margaret was angry, but I know now that she was anxious and afraid. And as an adult, I regret that I didn’t see the difference. It might have helped us both.

Autism aside, our household of seven was a state of barely controlled chaos. My earliest memories are of rushed mornings — dressing, brushing teeth, shoveling Cheerios, trying to stay out of our father’s way — he the chronically sleep-deprived obstetrician. A first and most vivid memory is the sound of my older brother Michael crying in the dark in the room he shared with Larry as we got dressed for school. I was 6 and I adored him, but I remember thinking wearily, “Oh. Shut. Up.”

There was an endless pile of laundry, drawers that never opened or closed properly, a snaky snarl of mismatched socks shared by we three girls. Our wardrobe was simplified by matching plaid uniforms of Catholic school. The refrigerator was a museum of blue macaroni and grey string beans, and God help you if you were in the bathroom when it was Dad’s turn for the shower. We strained our eyes at the tiny television set at the far end of the family room for two hours every the evening, but always did our homework first. The static fuzz of Dad’s Monday night football over Margaret’s blaring “Carmina Burana” in the living room and the swishy whisper of the pressure cooker in the kitchen. The smell of onions and Jergen’s soap. Underneath it all was a constant and terrible feeling that things would never be okay.

We managed. Later we could all admit that life with Margaret nurtured a collective, warped sense of humor that makes us who we are and also knits us together as family. But it was no picnic.

Sleeping in two upstairs rooms, we children shared Margaret’s nighttime unrest. A small figure in a flannel nightgown, she’d skitter down the dark hallway and thunder down the stairs spurred by an urgency we couldn’t understand but were all oppressed by. She was usually checking on her records — hundreds of albums in dog-eared covers crammed into a skinny kitchen closet. Their spines had become unreadable long ago, but Margaret knew them each by color and feel.

Flipping on the kitchen lights, she’d yank open the door, hunch over and thumb through the collection until she arrived at the record in question, tug it out, inspect it. Then she’d shove it back in, slam the door, flip off the lights and sprint back upstairs, usually scolding herself aloud, never quiet.

The rest of us lay upstairs listening and gripping the sheets in our fingers and toes. Sometimes one of us might go after her, which we all knew was useless. Never once had we deterred her from completing her mission. Not once. We were like sand and she was the ocean. Boom. Crash. Didn’t even seem to see us.

Our anxiety came from knowing that she’d wake up our father and he’d come roaring up the stairs in his underwear. This action was also futile, but he would succeed in waking and scaring anyone who’d had the incredible luck of sleeping through the first phase of Margaret’s nocturnal ramblings.

Then he’d stomp down the stairs and slam his bedroom door, swearing. Margaret would chastise herself into her cupped hand rendering a perfect imitation of our mother’s voice. “Now you go to bed, honey! Now you be quiet! It’s time for bed!” And then the impulse to check the records would seize her, and it would all happen all over again.

Years later, our memories softened and this whole Laurel and Hardy routine became something we’d laugh about, my siblings and I. Remember that time Margaret threw a meatball and it zinged Dad’s ear? Remember when she bounded naked into the kitchen and Fr. Kuhns was over? How about the time she ran up on stage during your choir concert? Remember when she threw up all over the table at The Old Spaghetti Factory right after we paid the bill? Remember?

Funny when we were sitting around on the side porch drinking beers and recalling days gone by. Not so funny during a sleepless night we were all out of shape for. At least we’d each grown smart enough, or weary enough, to realize that getting out of bed to reason with Margaret would be useless. Last night we’d all just lain awake and listened to her charge up and down the hall, this time checking on her toiletries bag, her towel or something else that had caught her eye in the bathroom. The checking soothed her. Dad, twenty years into retirement, slept through it all.

When it is finally morning, I hear Margaret run down the hall and blast water into the red claw foot tub. I’m pretty sure the bathroom door is wide open and my big sister is perched in the tub as naked as a peeled potato.  In the past, I would have jumped out of bed to try to manage the situation — shut the door, remind her about shutting the door, making sure she had a towel and clothes before she opened the door. But now I just lie in bed and think, “Oh, who the fuck cares. It’s just us.”

It’s just us. The fact that my entire family had gathered at the lake house this weekend was as precious as it had seemed unlikely. Ten years ago, after three decades of not talking about the pressure cooker of our childhood with Margaret, my family exploded. Someone said the wrong thing at the right time and it all came pouring out. It wasn’t pretty. It wasn’t ever resolved, but it was inevitable. We survived. We all moved on. Margaret too.

After the blowup, Margaret didn’t come out to the cabin anymore. And suddenly, the person who had held our childhoods hostage with her incomprehensible anxieties, her constant need for sameness and her fierce grip on our parents’ attention was suddenly absent. She left a hole. What was our family about if it wasn’t coping with whatever Margaret was inflicting upon us — laughter, anger or something in between? We didn’t seem to know.

My parents came sometimes, but less. My siblings and I returned in twos and threes, always happy to be together but feeling orphaned. And now, somehow, we were all here together on the Labor Day weekend of a gorgeous summer that just wouldn’t quit.

That Margaret had agreed to come was a wonderful surprise because at some point over the years she’d made it clear that her own house and her quiet routine were easier for her to manage than being among all of us. And that made all the years we’d struggled to include her somehow even sadder to me as I realized that being with us was harder for her than we could have ever imagined.

I’d watched her at dinner the night before, monitoring herself, moving into the adjacent room when we got too noisy, finding a way to be with us, despite how disruptive we were to her life. This was one hell of an irony I finally understood — how hard we made things for her. But she came, she stayed, and we had that time together. The fact that she kept us up all night didn’t diminish the grace of that.

When the bacon is finally ready, breakfast happens in a scramble, as is usually the case when my sister is involved. My parents gather their things. Larry will take them across in the boat and they’ll drive Margaret to her house, where we know she will holler goodbye and slam the door in their faces with a cheerful grin. “Ba-bye! Thanks for coming!” she’ll yell.

Before she leaves, I insist on a group photo. Front porch. Everybody! We never remember to take pictures in this family, I say. When I see this photo, I remember why. We all look terrible.

Mike is in his scary old bathrobe looking like he might not have anything on underneath. In mismatched pajamas, I look like Dad, who is not bad looking but is a man and in his 70s. Larry’s Slavic hair seems more salt than pepper. Ann appears older than I think she should, like someone’s nice aunt, not my tiny older sister who once wore headgear to bed and shopped in the children’s department through high school.

Margaret, on the other hand, looks pretty good. She took a bath, after all. Her thick hair, which she’s started coloring, stands on end like a hedgehog’s and she has a great, phony smile on her face. “Smile!” she says. We crowd in close, clasping hands, and just before the click, Margaret says, “Now, you shut up, Margaret!” in a perfect imitation of my teenage voice. Ten years ago, it would have made me cry. Now it makes us all howl. She grins. She lets me kiss her cheek and then she gets in the boat to go home. We all say goodbye. And three of us stagger back to bed.

In the years after the family blew up, Margaret made me realize that loving someone has very little to do with the other person and whether or not they ever absorb how you feel about them. I’ve always loved my sister. And even through decades of frustration, I knew that. I had no more control over loving her than I did over her crazy behavior. She was the center of everything in our household and the center of my life, for better and worse. I was conscious of her before I knew myself. My big sister — graceful and silent one minute and falling to pieces the next.

I continue to love her in the middle of our lives when I have finally realized that I can never really reach her, that she will never be able to understand how much I care about her and how I wake up in the night worrying about her and that I cry after I see her, every time. Or if she does know any of this, there is no conceivable way that she’d be able to tell me what it meant to her. Instead I try to be patient and kind when I am with her. And remember to be grateful for everything else I have. I have a lot of everything else in my life. In particular, what’s only become clear lately, maybe not even until this weekend, is how damn lucky I am to have my three other siblings.

Our volatile childhood with Margaret left us unprepared for life in so many ways. While we were hard-wired for a maniacal, screaming chase through Costco in search of a missing case of Ding Dongs, we never learned, for example, how to make light small talk with new acquaintances or host a dinner party that didn’t involve someone flinging food from one end of the table to the other. Ann once joked that she got to college and opened her proverbial toolbox and found it empty. How to get a naked, 170-pound-woman into her swimming suit in front of 50 curious onlookers — no problem. But appearing semi-normal at a job interview or on a first date — Lord help us all.

When I was floundering through my adolescence and young adulthood, my brothers and Ann were the only ones who could possibly have understood what I was going through. But calling on them for help would have felt like asking a drowning person if I could borrow his lifejacket for a few minutes.

Somehow we all made it into our own lifeboats. I’m a writer and I make my peace with the world by recording life as I watch it unfold. It’s my way of checking the records, I suppose. Ann teaches the children of immigrants to read English. (“Ah! Putin! Very bad man!” one of her Russian first graders recently related.) Mike is a scientist who uses phrases we don’t understand like “single nucleotide polymorphisms.” We just nod and know he knows we don’t know what he means and that he’ll let it slide. Larry, a lawyer, deals with people at their absolute worst — divorce, custody battles, lying, cheating each other, but then he goes home and tends to his fluffy rescue kitties and patiently sands the scratches out of the family boat each winter, year after year.

I used to think of these three people as accidental participants in the unscripted drama of my life with Margaret. But now I realize how much I’ve always needed them. At some point, we crossed over the boundaries that defined our relationships as children — the culture of scarcity, sorrow and powerlessness. We became not friends but better than friends because there is never the need for backstory or apology. I now realize how much they are part of my story, which includes my future so much more than my past. Because the past, those years with Margaret, are gone. It has taken me so long to let go of those days. Only recently have I really accepted the fact that the obstacle I constructed my own life around, like a tree growing around a boulder, simply doesn’t exist anymore. And that I, like Margaret already has, very urgently need to move on and not miss out what’s coming next.

This is the flickering home movie of my childhood: Lots of Margaret. But also: when Ann slipped off the dock in April and plunged into the icy spring waters of the lake; Ann moving into her college dorm room and leaving a void in our shared bedroom; her wedding on a beautiful winter evening in a grand cathedral. Larry in high school belting out “Book of Love” on stage in front of a full house in a tiny tuxedo; Larry killing it on the drums in his college band; his perfectly unselfconscious skill at the helm of any boat since he was 9 years old. Mike hunched over his desk, studying chemistry, biology and calculus; the summer he got huge working construction and we realized we couldn’t punch each other anymore; his solitary and patient vigil at the water’s edge, fishing rod in hand, for as long as I can remember. And the movie keeps rolling into the recent past and into the future.

Remember when you got divorced? When your boy was sick? Remember when my house caught on fire and when you lost your job? Remember how I was there, and you were there and we were always all there together, even though we didn’t quite know how to comfort each other?

I love them the way you can only love someone whose name you knew before you knew your own, before you even knew it was love, this fierce, take-no-prisoners loyalty. Mike, now across the world in Israel, stays up late to Skype and listen to me talk about the book I am trying to write; I struggle to understand what he is doing with the tiny, jewel-colored salamanders he’s growing in his lab and why they sometimes have two heads. Larry listens to me weep when my sweet old dog dies, and I worry over him — his job, his health, the teenaged state of his car — like only a sister can. Ann, with three kids, a full time job and a busy life, always picks up when I call. And when things go south, they are the first people I think of.

Nobody tells you that your family can break your heart and then mend it together again. As a 6-year-old, I’d never have believed that those three other children sitting around the sticky breakfast table, spooning cereal into their tired faces, would be the glue to hold the second half of my life together. But here they are, all three of them, on my team and year-by-year growing more precious to me. Having them by my side is like a flashlight in a dark basement as I feel around for the light switch. And underneath it all is the joyful and growing feeling that everything might be okay after all.

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Book Review: The Way Things Look to Me

FC9780312577896 Roopa Farooki’s The Way Things Look to Me is a wonderful novel about three British Asian siblings — Asif, Yasmin and Lila — and the effect that Yasmin’s Asperger’s syndrome has on all of their lives/

First we have Asif Declan Kalil Murphy, whose name carries the mixed heritage of his Irish father and South Asian mother. At the young age of 18, Asif becomes, suddenly and sadly, the head of the family when his mother dies of an undetected heart condition, following her husband in death. Asif, abandoning postgraduate plans at Cambridge, moves home to take responsibility for Yasmin, thereby sacrificing forever, or so he thinks, his future. Arriving home on a Friday evening, “He imagines this is what single mothers feel like. He realizes uncomfortably that he would rather be anywhere but here…Asif is left to do the looking after, and the coping, and the caring; as he has his whole life, especially now that his parents are dead.”

Next we meet Yasmin, convincingly draw by Farooki as a young woman with above average intelligence and Asperger’s syndrome, both of which leave her struggling to connect with the people around her. She copes by keeping strict routines and using strategies designed by her now dead mother to try to respond correctly. Greeting her brother, Farooki writes, “After Yasmin has held his gaze for a count of Mississippi One Mississippi Two, just as her mother taught her to do, she takes the plates out of the drying rack and puts them back in the sink, to wash up all over again.”

Lila is the fierce youngest daughter, gorgeous and perfectly made up, a guise she maintains to hide debilitating eczema. Where Asif is the good son, Lila is the bad girl, the angry one, art school drop out, serial dater and seemingly directionless. Her entire life has been dominated by her anger at losing her mother at an early age not to death but to Yasmin’s Asperger’s. She can be viscous to everyone around her, especially her sister, whom she has resented since Yasmin was a baby. Farooki writes, “He and Lila realized then, with childish despondency and adult resignation, at the tender ages of six and five, that crybaby, tantrum-throwing, head-banging Yasmin had stolen their mother and that they were never going to get her back. And the small tragedy was that they were right.”

Farooki sets up the story and the characters in a wonderful and convincing way exploring the anger, guilt and resentment that can bind a family, especially one in which a sibling’s disability takes center stage. Not only does she demonstrate what life can be like for the other siblings, both the dutiful and the resentful, but she also gives us, through Yasmin, a window into Asperger’s and how it also confounds the person who has it as well as those around her. I enjoyed this story, although I was a little disappointed by the too tidy ending, especially for Lila and Asif. Not wanting to spoil the story, I won’t say more there. Farooki is a great writer and this is a book well worth reading.

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Movie review: Loving Lampposts: Living Autistic

I’d like to recommend this documentary by Todd Drezner called “Loving Lampposts: Living Autistic.”

At the beginning of the film, Drezner introduces his son, Sam, who has autism, and also has a strong attachment to several specific lampposts in his neighborhood. He’s a sweet-faced little kid, and the lamppost theme, with echoes of Narnia, set me up to expect a charming, though perhaps sad family story.

“Loving Lampposts” is so much more than charming, and it isn’t sad; it’s inspiring.

Sam has recently been diagnosed, so Drezner sets out to understand what autism is. Using a series of autism experts, parents of children with austism, adults with autism, and some autism experts who are also parents, Drezner offers a broader look than we are used to getting about Autism Spectrum Disorder (ASD).

For one thing, he almost immediately introduces an invisible population — adults with ASD. So often children are the focus of stories about autism. Being the sister of a woman with autism, I try to bring up the realities of adult life whenever possible. It is wonderful to see this father of a young boy already looking down the road.

Drezner also looks at the “Defeat Autism Now” movement, which, with high profile spokespeople like Jenny McCarthy, promises “recovery” from autism through things like vitamins, supplements, dietary changes and oxygen therapies. Drezner offers a dispassionate critique of the movement by simply letting it speak for itself, which is very valuable, I think.

He also offers some insight into the rise in numbers of children with ASD. While one in 100 are now thought to be affected (up from 1 in 10,000 in the 1960s), Drezner’s sources point to other possible reasons for the rise — early detection, increased diagnoses, a broadening of the definition to include Asperger’s Disorder, and PDDNOS, and categorizing children who would have once been seen as having childhood schizophrenia with ASD. This is all good news to be heard over the clamor of fear mongering about an epidemic.

He consideres the vaccine controversy as well showing, very simply, that Dr. Wakefield’s study was the only one to ever find a link between vaccines and autism, and that one study has been retracted and completely and utterly refuted.

My favorite part of this film is Drezner focus on the neuro-diversity movement, the idea that instead of trying so hard to normalize behavior and mainstream people with autism, we can simply appreciate it as part of who they are. Once you give up on assimilation, “You begin to think less about changing behaviors and more about developing relationships,” as one father puts it.

Several parents talked about acceptance — not as giving up or being passive, but as being compassionate and finding joy in the relationship they can have with their kids. That really rang true to me, and is something I have certainly found in my own family as I strive to accept my sister for who she is rather than who I wish she could be.

You can buy the DVD or sponsor a screening of the film. Details are available at Loving Lampposts website.

I recommend this film for parents, siblings, professionals and anyone trying to better understand what autism is.

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Book review: The Story of a Beautiful Girl

FC9780446574464The Story of a Beautiful Girl is a love story unlike any before.

Written by best-selling author Rachel Simon, this novel delves into unexplored territory — the bond between Linny and Homan, two residents locked away at the School for the Incurable and Feebleminded in the 1960s.

The book opens with their escape on a cold rainy night. The two take shelter at the farmhouse of a widow named Martha. Linny seems mute and Homan is deaf, but their desperation is clearly communicated.

Soon institution staff apprehend Linny, and Homan escapes. But they’ve quickly earned Martha’s sympathy, and she takes up the charge Linny whispers as she is led away — to hide the newborn infant girl hidden in the attic.

Thus begins a story that follows the characters through the next 40 years: Linny, who remains at the institution and finds her voice; Homan, always trying to find his way back to her; and Martha, raising the girl named Julia.

The Story of a Beautiful Girl explores the love between two people that others assume incapable of connection. And, though fiction, offers a look into the dark past of America’s institutions and the abuse and neglect of people too vulnerable to fight back.

Simon is the author of Riding the Bus With My Sister, a memoir chronicling her relationship with her sister, Beth, who has an intellectual disability. Beth was raised at home with Simon, during a national shift away from institutionalization. Her dark portrayal of the institutional world makes me wonder if it was often on her mind as it was on mine, as a reality my sister escaped.

Simon includes a sibling as a minor character in this story. Linny’s sister Lauren returns decades after her parents, embarrassed by their daughter’s behavior, confine Linny to the institution. It’s an interesting exploration of the siblings of that era who reconnected.

The book has been an Indie Bound Bestseller, Christian Science Monitor Bestseller and highlighted by Oprah Magazine and USA Today. Simon blogs frequently about her travels, her writing and her advocacy for people with disabilities.

The Story of a Beautiful Girl is a wonderful and brave story.

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My interview with Rosie O’Donnell

I’m really pleased to be able to share this audio file of my interview with Rosie O’Donnell on her radio show May 6.


Eileen Garvin May 6 2011 Interview with Rosie O’Donnell

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Into May

Emily from Auntie's Books, Eileen, Pat

Emily from Auntie's Books, Eileen, Pat

It’s been a busy few weeks for me and “How to be a Sister.”

In late April, I spoke at the Detroit Metro Parent Living with Autism conference. It was a wonderful event, and clearly geared toward the concerns of adults with ASD, not just children. In addition to my talk, which, of course, centered on siblings, the event included a session for fathers. These are just two examples of how the conversation about autism is changing to consider how it affects the whole family.

Later that same week, I gave a talk with my mother, Pat Garvin, for the ARC of Spokane Family Support Conference. Mom talked about how Margaret’s house came to be. This is something I am often asked about when I speak, as parents are eager to have some kind of model. I’ve asked my Mom to write about the process, and I will post it when she does.

Last week, on May 6, I was a guest on Rosie O’Donnell’s radio show — such an honor. (I’ve loved her since I saw her in “A League of Their Own.” Rosie has always been a champion of children with disabilities and families. After my sweaty palms and dry mouth subsided, I had an absolute blast talking with her. I’ll post the link to the interview once I have permission.

Last weekend I was at the Paulina Springs Bookstores in Sisters and Madras — lovely independents that provided much needed community centers in rural Oregon.

This weekend I will head north to Village Books in Bellingham for a reading on May 15. After that, I hope to get back to more writing.

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April in Oregon Country

Though I have the hardest working publisher in New York, there is no end of effort I can put in as a first time author.

So I’ve been busy this month sending out emails about my upcoming events in Oregon.

The Paulina Springs Bookstore in Sisters and in Redmond will host me on May 6 and 7, respectively. I know the bookstores have contacted the newspapers and libraries, so I’ve researched lists that I think will be helpful: public school teachers, college professors and parent groups.

The closest parent group to the Redmond-Sisters-Bend area is Burns, hours to the east on a long, lonely stretch of highway.

I can’t find an email address for the parent group contact, Lisa Tiller, but there is a phone number. A man answers the phone and tells me she is not home. She is at a meeting, she’ll be home later and he’ll give her the message.

How many times did I hear my dad say those same words, holding the kitchen phone, the long cord strung along the counter top? This is the phone that never stopped ringing, and on the other end was always a worried parent, usually a mom, who wanted to talk to mine. Mom spent endless hours with her ear pressed to the receiver offering what advice she had to give in this new frontier that was autism, or just listening if that was what the other mom needed.

Lisa’s husband takes my number. I mention that I got her name off the Autism Society of Oregon website. And there is this pause.

He asks if I have a child with autism. I say no, I have a sister. How old, he wants to know. Forty-four yesterday, I say. He tells me that their son is 17, still at home and just had his IEP meeting yesterday. Tonight’s meeting is also about that boy.

I think all you can do, he says, is learn by sharing your story with other people.

The following week I find myself on quiet highway 97 to Moro, south of Biggs and east of The Dalles.

You only have to be on this road for a minute to feel like the Columbia River Gorge is a world away. This is a country of rolling hills covered in young wheat greening up against the spring sky. All you can see for mile upon mile is curves of green.

At the Sherman County Public library I meet a group of locals, and every one of them had a different story.

There is the mom battling credit card companies who gave cards to her son, a young man with Aspergers and no sense of money.

I meet a grandmother who takes care of her grandon, who has autism, because his mom is too overwhelmed with school, work and her other kids.

A young couple, with no autism in the family, is reading my book. And the woman tells me every night she reads some more and then tells her little girls as she tucks them in bed— guess what Margaret did today?

And sisters, two of a family of seven, now in their 50s and with a brother who was never diagnosed, but they are certain is on the spectrum.

We share our stories, punch, and homemade Easter cookies.

The wind out here is fierce — it shakes the windows and rattles the doorknobs.

At the end of the evening, Jeanne McArthur, my host, walks me to my car. We talk about the need for white space — in art, in our relationships, in this rural landscape.

As I drive north, I see hundreds of windmills I hadn’t noticed before. They rise, sharp and white like giants against the darkening sky.

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HuffPo and Rosie O’Donnell

SatelliteOn Monday, I was scrolling through my Gmail alerts and saw that the Huffington Post had published a post: National Autism Month: 9 Poignant Books.

Since I like to keep up on what is recommended, I clicked through the list, which contains some of my favorites, including Thinking in Pictures and The Curious Incident of the Dog in the Nighttime.

Then I saw my book cover and nearly fell out of my chair. Thanks, HuffPo!

The next day I got an email from the producer of Rosie O’Donnell’s radio show, asking me to be a guest. After googling her name to make sure it was not one of my brothers playing a joke, I called back and accepted!

I’ll be on Rosie Radio (Sirius 815 and XM 94) on 5/5 at 11:15 EST.

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