If I Fall, If I Die

Belief

I used to believe that everything would be okay.
That there was nothing that couldn't be fixed by an apology
Or a Band-aid
Or a hug.

I used to believe that things would always be as they were.
That achievement and love and health were more than just luck.
That I would be happy and surrounded
Forever.

I used to believe that tragedy only happened to other people.
Until one day there was a seizure. And cancer.
But still he was okay.
But not forever.

I used to believe that a baby would make things whole again.
A beautiful child with bright blue eyes and a happy smile.
He was perfect.
But now he cannot speak.

I used to believe in science and medicine.
That whatever could be diagnosed could be cured.
I used to believe that "what if" was only pointless worrying.
But now

I know better.

This poem was inspired by the novel If I Fall, If I Die by Michael Christie. The book is a coming of age tale of a boy who, because of his mother's agoraphobia, spends his childhood inside his house. Join From Left to Write on January 22 as we discuss If I Fall, If I Die. As a member, I received a copy of the book for review purposes. 

Big Data, Little Boy

According to the CDC, 1 in 68 children has been identified with autism spectrum disorder. The rate is five times higher for boys than for girls. These are staggering numbers. And like many parents of autistic children, I'd like to know why the numbers are so high.

To clarify, I'm not looking to blame anyone. I'm not trying to point to a government conspiracy or looking to sue "Big Pharma."

I'm also not looking to cure anyone who doesn't want to be cured. Even the term "cure" is controversial, as autism is not a disease. And, just as many in the deaf community choose not to become hearing, even if that technology is available to them, many autistics do not want to change their neurology. Being autistic is a fundamental piece of who they are, and feel no desire to change. I can respect that.

However, Moe is severely disabled and if there is information that can help me find ways to help him thrive, I want to do that. And I believe at least some of the answers come with information. Lots and lots of information.

This summer, Google and Autism Speaks announced a partnership "to accelerate advances in autism diagnosis, subtyping and treatment as part of Autism Speaks 10,000 Genomes Program." Autism Speaks would like to sequence 10,000 genomes, and will host the data on the Google Cloud Platform.

Like all data, this genome information is morally neutral. What we do with it may not be. Some are concerned that it will eventually be used "cure" autistics, or to detect autism as part of prenatal screening (much like Downs Syndrome can be detected). But I have high hopes for this kind of research. There is so much we don't yet know about autism. Why do some kids respond to early intervention, seeming to "recover" almost completely, while others do not? Why do some kids seem to regress, as Moe did? What are factors leading to relative severity of the disorder, and why are certain co-morbid conditions, like epilepsy, so prevalent? Why might some seem to respond better to dietary or biomedical interventions while others do not?

Today, parents need to try out a host of expensive and time consuming therapies to determine which ones are the most effective for their kids. And with so many options, it is hard to try everything. It would be valuable to know, a priori, what kinds of therapies Moe might respond to best, or where to focus our efforts. 

We must not, however, forget that, our ultimate concern is at the most individual level. That the goal is help autistic individuals and their families. Whatever Big Data may someday tell me about what caused Moe's autism, or what his subtype, he is a human being with his own likes and dislikes. And we humans have a funny way of not always doing or responding the way the data says we should. We must be careful to remember that while their genomes can be classified, autistic people are each unique individuals.

I am a fan of big data. But I'm an even bigger fan of one little boy.

Moe, perusing a toy catalog while
snuggling his Android.

This post was inspired by Dataclysm: Who We Are (When We Think No One’s Looking) by OKCupid co-founder Christian Rudder. Join From Left to Write on October 9th as we discuss Dataclysm. As a member, I received a copy of the book for review purposes.

Visit Autism Speaks to learn more about the AUT10K project or read this story from USA Today.

A World of Pure Imagination

“But that’s impossible!” said little Charlie, staring at his grandfather.

“Of course it’s impossible!” cried Grandpa Joe. “It’s completely absurd! But Mr. Willy Wonka has done it!”

I work as a writer for a web company. I also write on my own, sometimes on this blog, and sometimes in a journal (but my journal entries are often like unpolished essays). Very occasionally, I write fiction. It is something I want to do more.

For me, fiction is the hardest to write.

Creativity with constraints is so much easier. Blog posts are constrained by reality. I try to relay events, or memories or emotions in a way that evokes feeling, but that is still based on my true experience. And reality has its limits.

But fiction has no constraints. Letting go of those constraints can be liberating, but it is also overwhelming. When the possibility of writing something becomes the possibility of writing anything, how do you even start? But it is only when you let go of those constraints, when you are no longer governed by the rules of what is possible, that you can invent gum that is actually a three course meal. Or an elevator that goes in every direction, including up and out of a building. Or a little boy who finds a golden ticket and enters a “world of pure imagination.”

Pure imagination.

I have worked in Silicon Valley for a long time, and seen a lot of creative ideas. As part of a design team, I think a lot about creativity. How do you evoke new ideas? How do you nurture a creative environment? But even the most entrepreneurial tend to think with constraints: business constraints or computing constraints (maybe even legal constraints). It is very hard for someone to come up with a truly original idea, to think freely without the limits of what is possible.

But when we write, we don’t need to worry about those constraints. Don’t have the computing power? Write it down, and now you do. Can’t figure out how your character is going to be in two places at once? Just write it down - you’ll figure it out later. In fiction, your characters can fly, be invisible or go days without eating. They can be everything and nothing, and things we haven’t even thought of yet.

It is hard to free your mind in such a way. But when done right, amazing things can happen.

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This post was inspired by the classic Charlie and the Chocolate Factory by Roald Dahl, which celebrates its 50th anniversary this year. To celebrate, Penguin Young Readers Group, in partnership with Dylan’s Candy Bar, the world-famous candy emporium, and First Book, a nonprofit social enterprise that provides books for children from low-income families, is launching a year-long international celebration.

Head over to From Left to Write to learn how you and your child can have a chance to win the Golden Ticket Sweepstakes where the grand prize is a magical trip to New York City plus much more! For every entry submitted, Penguin Young Readers Group will make a donation to First Book. Then, join From Left to Write on July 24 as we discuss Charlie and the Chocolate Factory. As a book club member, I received a copy of the book for review purposes.

Reasons My Kids Are Smiling

Reasons I'm smiling? Those two.

This post was inspire by the book Reasons My Kid is Crying by Greg Pembroke who captures frustrating and often hilarious parenting moments through captioned photos of unhappy kids. Join From Left to Write on April 15 as we discuss Reasons My Kid is Crying. As a member, I received a copy of the book for review purposes.

Book Review: The Idea of Him

Sometimes I think that I should have stayed in New York for a while after business school. Or maybe I should have at least moved to San Francisco instead of returning to the peninsula—closer to work but definitely not the city. I have an image of what that could have been like.

Sometimes I wonder what things would be like if I hadn't met Jeff. Or if we had decided not to have kids. Or if we had bought a different house. Or if Moe was a typical kid and we could travel and go out as a family. Or if I were a different kind of parent. I have an image in my head of what that could have been like.

The thing is, I made all of those decisions—moving back to California, living in Silicon Valley, having kids—for good reasons. I wanted to be closer to my family. I didn't want the long commute. I always wanted kids. And as for Moe? He is who he is. I'd make the same decisions today.

Still, my life definitely does not look like what I thought it would look like by now. And sometimes I think that means I've made a mistake.

It seems we all spend a lot of time thinking about what we should be doing. Facebook and Pinterest are full of so many wonderful organizing-decorating-crafting-sewing-cooking-exercising-mindfulness-cleaning ideas that show me what my life is supposed to look like. But is that what I want my life to look like?

I look around at all the Silicon Valley wealth and I see people doing things they think they should be doing, and driving the cars they should be driving (it's a Tesla), and sending their kids to the schools they should be going to. They eat at the right restaurants and live in the right zip codes and throw the right parties. But is that what they really want to be doing? Is that what I want to be doing?

People who run companies do things they think they are supposed to because they are Silicon Vally companies and that is what those companies do. As if personal chefs and free meals and laundry service somehow legitimize your place in the Valley.

It can be tough when your life doesn't look like what you expected. But it is even tougher when you are trying to live up to some idea of what you think your life should be.

This post was inspired by the novel The Idea of Him by Holly Peterson. Allie thought she had the perfect husband, until she finds him and another woman in a compromising position in their own apartment. Join From Left to Write on April we discuss The Idea of Him. Join us for a live chat with Holly on April 3.  As a member, I received a copy of the book for review purposes.

The Work of Happiness

What does it take to be happy?

Happiness seems to be a popular topic these days, inspiring research, TED talks, and lots and lots of books. I've recently read a few of these, including most of The Happiness Hypothesis, which I was enjoying but took a break from because I left my Kindle in Big Sur (Big Sur+good book+great friends=Happy, by the way). And most recently, I read Happier at Home by Gretchen Rubin, as a part of From Left to Write.

I have always been a fairly optimistic, happy person. Even after my brother passed away, though I was devastated, I still considered myself a generally happy person. Many great things have happened since then and I wasn't going to let the rest of my life slip away.

But having a child with special needs has put a damper on my happiness. This is not Moe's fault. Nor is it just my fate to be unhappy. The premise of most happiness research is that happiness is within our own control; external circumstances have a fairly small impact on any person's long term happiness.

But I admit, I've struggled with finding that place of optimism.

What I find so difficult about raising a child with autism, is the lack of control I have over how my day will go or what my life looks like. My house, which should be a place of refuge, is a source of almost constant stress. I cannot, for example, as Ms. Rubin does for herself, create "shrines" to things I loves or that make me happy. My collection of miniature chairs, for example, remains packed away, for surely Moe would love them to pieces. Literally.

I very much enjoy decorating, and interior design is a growing hobby of mine. But my own home is not the way I'd like it to be. I had to remove curtains because Moe pulled them down. China is hidden in a locked closet rather than a buffet to protect the pieces we still have left. I do what I can to create an environment that is both functional for us and pleasing to be in, but it isn't ideal.

Every aspect of our lives has changed. We don't travel. We rarely go out with friends. And until recently when I returned to work after six years of being a stay at home mom, I had lost that really big part of myself too.

It is not that these things are required to be happy. Autism has made it tough to do many things that formerly made me happy—but these things should not be necessary. Happiness comes from within; I know that. And yet, reading a book like Happiness at Home, I realize how much easier it is to be happy when you're already pretty happy to begin with and when you have a pretty good measure of control over your life.

If there's anything I've learned from Moe, however, it is that when things are tough, we just have to try a little harder. I'm working on it.
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This post was inspired by Happier at Home by Gretchen Rubin where she runs a nine month experiment to create happier surroundings. Join From Left to Write on January 6 we discuss Happier at Home. You can also chat live with Gretchen Rubin on January 7 on Facebook! As a member, I received a copy of the book for review purposes.

Staying Connected After Returning to Work

Tomorrow, I'm returning to full time work after being a stay at home mom for over six years. In some ways, it seems like yesterday I was working at my last start-up. In other ways, I am a completely different person. My life, two children and one autism diagnosis later, is completely altered. And yet, inside, I am the same person. I need to bring that person into the light again.

I am beyond excited about the change. But I am also incredibly anxious about what I am leaving behind. When I became a mother, I made a commitment to love and protect my children. How can I protect them from an office? How will I know that they are safe and happy, especially when one of them cannot speak?

I always wanted my home to be the one the kids and their friends came to for parties and playdates. As it is now, regardless of my work, with Moe's full time therapy schedule, and our small Bay Area house, this isn't possible.

I worry about losing my connection with both kids, but especially with Jelly, who will be entering kindergarten next year. Who will help her with her homework? Will I know her friends like my mom knew mine?

Will I know what she is up to, especially now that the online world is so significant and much less visible. How will I know she is safe? How will I know she isn't being bullied? Or the bully?

The recent suicide of young teen Rebecca Sedwick after being bullied by two girls, shows how easily parents can be disconnected from their children. So much so, that parents of one of the accused bullies has asserted that her account must have been hacked. This seems unlikely to me, but more and more, it feels impossible to truly know what our kids are up to. Their online personas can be so totally different from their offline ones.

Obviously, I'm projecting. Jelly is only in preschool. Moe is home with very capable nannies and therapists. Jeff works just down the street. I know there are plenty of families with two working parents; it is probably more common than not in the Bay Area. I would never think a working mother wouldn't be as connected to her children as one who stays home. It will just be different.

And, I hope, better.

This post was inspired by The Dinner, a novel by Herman Koch. Two brothers and their wives sit down for a tension filled dinner to discuss a tragedy that can change both families’ lives forever. Join From Left to Write on October 29 as we discuss The Dinner.  As a member, I received a copy of the book for review purposes.

Gold Medal Winner

In the special needs community, we like to say "there are no winners in the hardship olympics." There's no better way to make a parent feel lousy than to one-up her with your own problems. You know the type, right? If I said "Poor Moe has had a fever for two days" she would say "That's nothing! My kid once had a 103 fever for a week!" Whatever is going on with you, someone else has it worse. That's a given. But no one wants to play a game of misery one-upmanship.

On the other hand, I have to admit it gets to me when I hear other people complaining about "typical" problems with their kids. "I could not get little Jimmy to go to bed when we were on vacation in Lake Tahoe!" It is petty, but I can't help but think "I would kill to be able to go on vacation in Lake Tahoe - with our without sleep."

We all have problems. The truth is, if I had two typically developing kids, I'd be complaining about the same things. And, yes, parenting any child is challenging. We only know what we know. And as the parent of one child with a disability, and one without, I live in both worlds. I complain about Jelly's non-stop chatter in one breath, then pray for words - any words - from Moe in the next. Both are legitimate, and yet one certainly carries more weight. I have that perspective. I also know that things could be worse. Friends' kids struggle with seizures, mobility issues, and other medical concerns we, thankfully, don't have to deal with.

There is a sociological theory (that I can't seem to find a name for) that says that we compare ourselves to others who are out of reach, but just so. In other words, someone might be jealous of their neighbor's new car, or the size of the houses one town over, but they aren't really jealous of, say Oprah Winfrey. Most of us know we can't actually be billionaires. I suppose that's why they call it "keeping up with the Joneses" and not "keeping up with the Winfreys."

I've started feeling this way within the special needs community. I have become much better at not being jealous of my friends' "normal" lives. Instead, I look at other kids with autism. I see the strides they're making and I wonder why Moe can't be more like them. Why can't he at least talk? Why can't he make as much progress with his AAC device? Why couldn't Moe have Asperger's or ADHD instead of being so severely affected with autism?

It is unfair, of course, and takes away from the very real challenges that families struggling with those disorders face. It is also unfair to Moe who is on his own path, and doing the best he can. We are doing our best together but sometimes I can't help myself.

I recently read "Raising My Rainbow," by Lori Duron. The book is about raising a young boy who is gender non-conforming, preferring girl toys and clothes to traditional boy things. Something didn't sit right with me in this book, but I tried to relate to the author's message. As parents of kids with autism understand all too well, it is tough to be a kid in a world where blending in is valued, and standing out for being different for any reason is a call for teasing and bullies. At one point, however, she relates raising her son C.J. to having a special needs child:

Special needs kids are often defined by what they cannot do. My son cannot blend in. He cannot wear boring socks. He cannot resist having his nails painted. He cannot stop dancing when music comes on. He cannot resist the urge to strike a pose for the camera...

My honest reaction to that passage? HOLD THE EVER LOVING PHONE. Your son has special needs because he cannot wear boring socks?? I should have such problems. (Also, plenty of girls don't dance or strike a pose, but that's for another post.) And this passage seems to take away from the very real problems of bullying and isolation that her son may face some day as a boy who prefers traditionally girl things. But my kid can't talk. He isn't toilet trained. He doesn't use a fork. We cannot find an appropriate school for him, for Pete's sake. I have a hard time sympathizing with a family because their four year old (yes - the kid was skill in PreK) likes sparkly socks.

Is this fair? Probably not. And I admit it comes from a place where I already found much of this story somewhat disingenuous. (It seemed to be jumping the gun, for example, to start researching gender reassignment surgery because her two and half year old loved Barbies.) That said, one message is clear. No one has it easy, and everyone's problems are their own. But before you start complaining, try to keep some perspective and remember that someone is praying for the things you take for granted.

This post was inspired by the memoir Raising My Rainbow by Lori Duron as she shares her journey raising a gender creative son. Join From Left to Write on September 5 as we discuss Raising My Rainbow.  As a member, I received a copy of the book for review purposes.

For other book reviews I've done, see the Book Reviews tab above.

Skills, Expertise, and Cheese

A couple years ago I wrote a piece about being (or not being) really good at something. With autistic people, such talents are often called "splinter skills," meaning that an otherwise "low functioning" individual might have one outstanding skill. For some that may be true, but autistic people, like anyone, can be good at one thing or at many things. And non-autistic people can, of course, have an outstanding skill that stands out above the rest.

Speaking of skills, I've recently begun looking for a job. A job search is all about highlighting your skills, at least those that might make a difference in the workplace. I got skillz. I can write (see previous sentence) and speak in front of a group. I am good at making complicated products or topics easy for people to understand. I can organize and prioritize and probably some other izes too.

When I was interviewing for the last job I had, my interviewer asked me a question that threw me a bit. He asked me what I was expert at. I was momentarily stumped. Skill is different than expertise. In technology, someone might be a skilled programmer, but not, say, a security expert. She might be a skilled graphic designer but not expert in user experience.

I am a skilled baker and cook, but I am by no means an expert. If something goes wrong, I can't troubleshoot or adjust. I throw out and start over. Someone might be a skilled trumpet player, able to read music and play with good tone, maybe even improvise a jazz solo. But expertise requires something more, something reserved for that top few who really know the instrument. Who don't just read the music (or follow the recipe, or sew the pattern), but who take it to the next level, responding to shifts in the environment or the subtleties of the instrument or something that I'm not expert enough to even explain.

I don't feature my special needs parenting front and center on my resume, though several pieces about my experience are included as writing samples on my portfolio. It is hard to find a job after being out of the workforce for a while, and I don't want to give an employer any doubts about to my ability to perform a job. It's ironic, because I am confident that being a parent, and especially an autism parent, has made me better equipped to perform at any job. And now, because of this experience, I can say the I am expert in one very important thing:

Getting. Shit. Done.

If you've met an autism parent, you've met a parent who has battled regional centers, school districts, insurance companies and doctors offices. There's no roadblock I can't clear, no phone call I won't make, no schedule I can't maneuver. I cannot be swayed by intimidation or judgement or ignorance. I make critical decisions on a daily basis and multi-task like nobody's business. I have learned sign language, speech and occupational therapy skills, not to mention biology, neurology and law. No bureaucracy is too big, no budget too small.

I'm not sure I'm an autism expert. But if you need something done, trust me: ask an autism mom.

This post was inspired by The Whole Fromage by Kathe Lison, who traveled to France to discover its artisanal cheeses and speak with real cheese experts. Join From Left to Write on August 22 as we discuss The Whole Fromage.  As a member, I received a copy of the book for review purposes.

Heart

"You were strangers in the land of Egypt."

Passover was just a couple weeks ago, and I am always struck by the way we celebrate the exodus from Egypt. During the seder, we eat foods that remind us of the hardships suffered when the Jews were slaves under Pharoah. We do this not just as a recreation, but because we too were slaves. Not our ancestors, not people thousands of years ago, but us. We were there.

It is like this when you have children. I've heard it said that being a mother is like having your heart walk around outside of your body. When Jelly goes to school, she takes a piece of me with her. I am only whole again when she returns.

Jelly wears her heart on her sleeve. When she cries, or is frustrated, when she talks about her friends and what she's doing at school, my emotions go with her. As she grows, and faces the trials and tribulations of childhood, I will ache and rejoice with her; not only because I've felt those same things before but because I am her, and she is me.

When Moe is frustrated or anxious, when he is unable to communicate, I am frustrated too. I feel his struggle as if it were my own. When he smiles at me, or holds my hand, my heart is lifted. When Moe needed stitches, I felt his fear. I felt his pain as the needle pierced his skin. I knew I couldn't take the pain from him, but I could share it.

But with Moe, it is complicated. I don't really know how he experiences the world. When he flicks his fingers in front of his eyes, what does he see? What is it like when he struggles to speak? How does he feel when he is so unable to regulate his body that he slams himself into the wall, or comes full force at me while biting a pillow?

How does the world look to him? Sound to him?

I may never know.

Even though our brains are wired differently, he is still my son, a part of me.

He is my heart.

This post was inspired by the novel Afterwards by Rosamund Lupton. After witnessing her children's school set ablaze, Grace attempts to find the arsonist as her teenage daughter lies in a coma. Join From Left to Write on April 11 as we discuss Afterwards. As a member, I received a copy of the book for review purposes.

Knowing Me, Knowing You

How many times have I said "if only I could get inside Moe's brain for a day?" When my online book group, From Left To Write, announced we were reading "Raising Cubby: A Father and Son's Adventures with Asperger's, Trains, Tractors and High Explosives," I jumped at the chance to read a book written by an adult with autism. (I have also read John Elder Robison's first memoir, Look Me in the Eye.)

I have very little insight into how Moe thinks and feels. His processing of the world must be so different from mine. I imagine it is based much more on sensation and impulse, that he thinks, as Temple Grandin puts it, "in pictures" rather than words. How does the world sound to him? Look? When he covers his ears when the wind blows, is it because the sound hurts him? Or does he like the way it sounds when he covers his ears, just like he seems to enjoy laying on his back in the bath with his ears just below the water? I can only guess.

I know how Moe behaves in certain situations. I have a general sense of how Moe communicates his needs, what his various sounds and gestures mean. We make it through each day, somehow piecing together each other's demands. Clumsy as it is, it usually works. But sometimes there are things I can't puzzle out. Is he frustrated? Not feeling well? Hungry or thirsty or cold? Sometimes, he may himself not know; he is only five and still developing emotionally. But sometimes, I know he's trying to tell me what he needs, and I can't figure it out.

Reading the words of autistic adults can help. In many ways, they are perfectly suited to explain how it feels to have different sensory processing needs, why eye contact can be so challenging, or how to calm a restless body and mind. I do my best to listen. As Moe grows older, I hope that we will find some autistic adults who can help him understand his body and mind in a way I cannot.

But the thing that struck me most about this book, is how little the fact that John Robison had Asperger's seemed to help him raise his son, who was also later diagnosed with the same disorder. Although Robison suggests that some of this lack of insight may have been because he has Asperger's himself, that isn't the whole picture. The fact is that Cubby (the nickname Robison gives his son) is very different from his father. Cubby is outgoing and smart, but disorganized and has difficulty with executive functioning skills. He has some obsessive compulsive behaviors, like hand washing and hair brushing. John, on the other hand, struggles more with social behaviors. Both father and son have Asperger's, but it doesn't necessarily bring them much closer to understanding each other.

Sometimes we neurotypical (i.e. not autistic) parents of autistic kids are made to feel that we cannot possibly understand our autistic children. That the therapeutic approach many of us take to helping them succeed is inappropriate. That ABA methodologies are nothing short of abusive. These words sting--how could they not? We are told that others know better what our kids need.

I don't believe it.

Moe's autism is uniquely his. And while some of his experiences may very closely resemble the experiences of some other autistic people, others experiences may more closely resemble my own. He loves to have his feet rubbed, for example. So do I. Some people hate to have their feet touched. This probably has absolutely nothing to do with autism, but there is no way to know where the line begins. Moe's primary area of need is with language and communication. I can look at other people with autism and see how they have learned to communication, but those methods won't necessarily work for Moe.

In the end, we each have a unique perspective on the world. There are a billion factors involved, and who says who might understand Moe best? All I know is it is my job to try, and one I do with love and the best of intentions every single day.

This post was inspired by Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives by John Elder Robison. Parenting is a challenging job, but what challenges does a parent with Asperger's face? Join From Left to Write on March 12 as we discuss Raising Cubby. As a member, I received a copy of the book for review purposes.

A Life of Choice

"She hadn't made her life happen; it had happened to her."

-Kate, The Expats

So much of life is about the choices we make. One decision leads to another and another, figurative (or sometimes literal) forks in the road.

I've never lived abroad. There are relationships I should have ended sooner, and others I should have fought harder for. I might have chosen to live in New York City after graduate school, rather than come back to California. I've never lived in the heart of a big city, though I've always wanted to. 

I've had interesting jobs, married a good man, had children. I left my career to raise my kids.

There are smaller decisions too: bought this car instead of that, ordered the chicken instead of the fish. Some decisions are more important than others, of course. I've made some good choices and some bad ones. Some I wish I could do over and others I wouldn't change. But for the most part, these choices were mine to make freely.

I sat down to write this, thinking it was going to be a post about what happens when the choice is no longer yours. Because although I chose to be a mother, I didn't choose to be the mother a special needs child. I didn't choose to have a child with autism. And while I can tell myself that I can choose how I deal with the situation, sometimes I feel like my emotions are not truly under my control. While I aim to stay positive and hopeful, sometimes I am overwhelmed with despair, fear, and most of all, frustration.

But it struck me that the hardest part about parenting Moe is not the lack of choice. It is quite the opposite. Jeff and I have so many choices to make. What therapies do we try? Do we send Moe to school? If so, do we fight for a private placement? Do we try medications? What AAC device are we going to choose? Who do we trust to guide us through  all of this? Most of the time we are on our own and flying blind.

Of course we have to make many decisions for Jelly, but the right ones always seem to be a bit clearer. And the smaller ones seem to matter less. I don't mean to sound flippant about parenting her, but I am more confident in my instincts there - or at least that we will figure out pretty quickly if we've made the wrong ones.

I am thankful we live in a time when we have options for Moe. But sometimes the decisions become overwhelming. There I days I really wish my most difficult decision was "grande or venti?"  

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This post was inspired by mystery thriller novel The Expats, by Chris Pavone. Kate Moore sheds her old live to become a stay at home mom when her husband takes a job in Europe. As she attempts to reinvent herself, she ends up chasing her evasive husband's secrets. Join From Left to Write on January 22 as we discuss The Expats. As a member, I received a review copy of the book.

Not Quite Mistakes

A few days ago, I woke to the news that a business school classmate of mine passed away from lymphoma. He was not a friend of mine, though I always liked him. I wish I had known him better.

Later that day I got an email from my best friend in business school. He stayed in New York while I moved back to California and we drifted apart. It has been many years since I've seen him and it was nice to hear from him. I often wish I had stayed in New York for a few years after graduation. I don't think that opportunity will present itself again.

Last week, I had dinner with a group of my closest college friends. We were all dorm-mates our freshman year and remained close through college and beyond. But since we moved on from college, both literally and figuratively, we don't see each other much, at least not as a group. This was the second time we've gotten together and it was great.

But both times we've met, I've left feeling a little sad. Maybe wistful is a better word. I miss the closeness we had, although it comes back quickly. And of course we reminisce. I can't help but think of relationships past, and some that never came to be.

Part of this wistfulness has to do with having a chance to get back to myself for a while. We meet without our kids and spouses and it reminds me how different life is now. Being Moe's mom, or maybe just motherhood in general, has changed me and I often feel like I've lost some of myself. Perhaps this is just the normal cycle of life. Perhaps it is growth.

I am not unhappy now though my life certainly doesn't look anything like the one I had imagined in my twenties. A child with special needs. A career on hold. Even though I am the same person, sometimes I look back on choices I've made and wonder "what was I thinking?" But the truth is, I made the choices that made sense to me at the time, and that is all anyone can do.

This post is inspired by Getting Married and Other Mistakes by Barbara Slate. This graphic novel offers a raw, yet humorous look at what happens to Jo after a surprise divorce. Join From Left to Write on Thursday, June 28 as we discuss Getting Married and Other Mistakes by Barbara Slate. I received a review copy of the book and all opinions are my own.

Guilty

I had two majors in college: Sociology and Communications. One of the best classes I took was Sociology of Religion. In it, we discussed how the tenets of various religions guide the behavior of their followers.

For example (and I am greatly simplifying here), the Calvinists believed that their ultimate salvation was pre-destined by God alone. From a sociological perspective, what would this mean for people's behavior? Because people care what others think of them, and because no one wants to think they aren't one of the chosen ones, a lot of emphasis was attached to the values of thriftiness and hard work. This "Protestant work ethic," was deemed to be a sign that one was "chosen."

Observant Jews believe that a messiah will one day come, bringing with him an idyllic messianic age. The messiah, however, will only come when we are good enough to deserve it. But life is complicated. How do we know how to behave? By following the rules, of course. Judaism is quite a rule-based religion. There are rules about what to eat, how to dress, how to celebrate holidays, even how and when to have sex within the confines of marriage.

Logically, then, if you don't follow the rules (and it is nearly impossible to follow all the rules) you are the reason that the messiah does not come.

Think about that. The messiah hasn't come because you aren't good enough. You drove a car or turned on a light on Saturday morning, and now the messiah will not come.

Oy. Talk about Jewish guilt.

Ah, guilt. Such an ugly, gut-wrenching feeling.

And parenting, like religion, is full of it. Did you breastfeed long enough? Let your child cry it out? Use a pacifier? Return to work too soon? Choose the right preschool?

And if you are the parent of a child with special needs, the guilt just keeps piling on. Did you vaccinate? Not vaccinate? Were you overweight during pregnancy? Is it somehow my fault that Moe has a disability? I'm so full of guilt over Moe's autism, I could write a book. Maybe I will.


I suppose guilt could be useful for some things. A healthy amount of guilt helps you keep a clean conscience. Maybe you snuck out of the house as a teenager and got away with it, but the guilt continued to plague you, and you decided it wasn't worth it. Good guilt. Call your mother kind of guilt.

But much like its cousin regret, guilt is a backward facing emotion. It forces you to dwell in the past and prevents you from moving forward. This is bad guilt. This is eat-away-at-your-soul, keep-you-up-at-night guilt. And it is entirely unhelpful.

We had Moe's IEP today, and though I can't say much, I will say that Moe has made very little progress toward his goals during the last two years. So a couple months ago, we had a full independent assessment done by a very well-respected psychologist. She observed him in school, and showed us why his current program isn't working for him. And while I am thankful that we have this information now, I can't help but ask myself why we didn't do this sooner. Have we just wasted two critical years of Moe's development?

As my dad and my best friend both told me, it doesn't much matter. We are here now, and all we can do is look forward, make new decisions based on the information we have today, and hope they are the right ones, ones that will help him reach his greatest potential.

But that is easier said than done. Especially with 5,000 years of Jewish guilt to contend with.


This post is inspired by I AM FORBIDDEN <http://amzn.to/AyvkEl> by Anouk Markovits. Though not sisters by blood but through their Hasidic faith, Mila and Atara views the rules and structure of their culture differently. Mila seeks comfort in the Torah while Atara searches for answers in secular literature she is forbidden to read. Ultimately each must make an irrevocable decision that will change their lives forever. Join From Left to Write <http://www.fromlefttowrite.com> on May 8 as we discuss I AM FORBIDDEN. As a member, I received a copy of the book for review purposes.

Is it Grief?

"All of us...had a distinct plan that instantly turned to rubble. And we're not here to figure out how to clean up that rubble, or at least I'm not. I guess I'm here just to practice saying my story out loud."

--Natalie Taylor

I've heard many times that I should not grieve my son's autism diagnosis. That to say that I feel grief is to say that I feel my son has died. I do not feel that way.

I have heard this stated enough times by people that I respect. I take it seriously. I've commented on other blog posts and I've probably written about it here. I have heard this from both autistic adults and parents of autistic children. I want to understand it; I want to internalize it.

But I'm having trouble finding a better word.

Sad is okay, I'm told. Sad is not grief. Anger is okay too. But sad and angry seem to be missing something. Those words don't seem to capture the feeling that something important has been lost.

Natalie Taylor, in her memoir Signs of Life, shares the story of losing her young husband. "There comes a moment when it settles in that all the things we've pictured will never happen....This is as happy as we can ever be." She continues, "There is no image of the future on which we can rest comfortably."

These words make sense to me.

Of course it isn't true that "this is as happy as we can ever be." We live our lives. The sadness or hopelessness or loss that we feel after a diagnosis--or a death--fade and become background noise while other feelings begin to take center stage. But the hard feelings are always there, ready to show themselves. In one moment I may feel full of joy and connection and empowerment and in the next back to fear or frustration. Emotional swings can be triggered by stressful autism-related things, or by unrelated things, like the dog stealing food from the table, or an ever-growing pile of laundry.

Natalie talks about how, even though she is the same person, she sees everything through the eyes of a widow. Although the eyes of a widow are certainly different from the eyes of an autism parent, we are both forced to wear new glasses. Sometimes we can look around them, or tilt our heads down to peek over the top, but even that doesn't look right anymore. Our vision has permanently changed. And these glasses are not invisible; other people know that we are wearing them too.

I, like Natalie, have moments when I "think that I can somehow go back." I don't just wonder how things might have been different, I picture it, create scenes in my head of what life might have been like. I know this isn't healthy or productive. "I know full well that I should be going in one direction, but subconsciously my mind is in the other."

There is so much in this book I relate to. How do I reconcile the similarity of our feelings, knowing I should not grieve? I don't want Moe to think I felt like he died the day he was diagnosed. Nor do I want to diminish the feelings of those who are grieving someone who has actually passed away.

And what about the autism parents who don't grieve? Am I just a horrible person? Maybe we feel the same things but use a different label. Or maybe they don't remember what it was like during those first few years in the post-diagnosis fog. Maybe, like childbirth, we eventually forget the pain and only remember the joy. Perhaps childbirth is a better analogy after all. It is certainly a more positive one.

I'm not sure what Natalie or her FMG (Fairy Mom Godmother) would tell me. I think she might say that you feel what you feel, and there isn't much you can do about it. Or maybe her therapist, Dr. G, would ask why we need to label our feelings at all. We can just feel them.

And then Natalie would probably tell me to go read a book. I wonder which one she'd recommend.

During the fifth month of pregnancy with her first child, Natalie Taylor was devastated by the sudden death of her husband. Her journey with grief is chronicled in the memoir Signs of Life. Join From Left to Write on March 29 as we discuss Signs of Life by Natalie Taylor. As a member of From Left to Write, I received a copy of the book. All opinions are my own.

Expecting Adam

Do not tell me that God chose me to parent Moe. I don't believe there is a supply of babies hanging around, and when one is to be born, God picks just the right one for us.

No.

Jeff and I mixed our genes and out came Moe, perfect and flawed, with beautiful blue eyes and curly hair and autism.

-

Do not tell me that God doesn't give us anything we can't handle. If I were weaker, does that mean Moe would not have autism?

No.

You rise to the occasion. You just do. I love Moe so I have no choice but to parent him the best I can. I assure you, it isn't always pretty.

-

Do not tell me that I have been blessed by autism. I do not consider autism a blessing. Moe himself is a blessing, in as much as I believe in that word. He is my son and I love him unconditionally. But does the fact that he has autism make him more of a blessing than my other, neuro-typical child?

No.

Moe and Jelly are my children, completely different, but equally blessed, equally loved, both testing and teaching me every day.

-

Every so often, Moe will do something so appropriate, that I can't help but think he's going to be just fine. Maybe Moe isn't even autistic, perhaps just severely speech delayed. Someday all of this will be behind us.

No.

Moe is going to continue to grow and develop and learn how to cope in this world. But he he will always have autism, be autistic. I still can't quite let go of my dreams of Moe's future. In my head, he's an architect. Maybe he still will be. But maybe not. I don't know. But those are my dreams, not his. They are irrelevant.

-

Have I found acceptance, peace with where we are in life? Have I stopped asking "why me, why him?"

No.

But I'm working on it.

This post was inspired by the book Expecting Adam, by Martha Beck. I was given a copy of this book as part of From Left to Write. Read other posts inspired by Expecting Adam on Thursday, November 10, at From Left to Write.

For Better or Worse

For better or for worse.

I said it.

I meant it.

It's easy when things are better.

It's hard when they're worse.

My parents have been married almost 43 years. I have been married 6.

It is a short time but we've had to face a lot. I won't lie and say things are perfect. But they are good.

But every marriage has a breaking point. Even mine. Even yours.

Will it be the day to day annoyances that break you down until you just can't stand each other? Will it be the stress of having a special needs child, or maybe just children at all? Will it be infidelity? Financial stress? Simply growing in different directions? Abuse?

We haven't hit ours. I hope we never will.

But every marriage has a breaking point.

What's yours?

This post was inspired by Lost Edens, by Jamie Patterson. Struggling to save her marriage, she attempts to mold herself into the wife her husband wants her to be. As a member of From Left to Write book club, I received a copy of this book for review. You can read other members' posts inspired by Lost Edens on book club day, October 27, at From Left to Write.

The Soundtrack of Your Life

What is the soundtrack of your life?

Is it a thumping bass, moving you forward with rhythmic precision? Do you dance through life with the rise and fall of a waltz? Or are your days filled with the hectic unpredictability of a jazz improvisation?

Like many of us, I formed my musical taste during adolescence. I preferred dark, sensual singers and bands like Morrissey, Depeche Mode and The Cure. Although I could dress the part for the occasional concert, my personality was never quite so dark, so my collection of records, tapes, and eventually CDs, also included plenty of livelier bands like Duran Duran and Erasure.

My iPod is now filled with those same sounds, as well as some newer additions I've discovered along the way. My kids have their influence there as well, with Music Together as likely as Ben Folds to come on when I'm shuffling songs in the car. I used to obsess on whatever album I was into at the time, especially if it was new, playing it over and over. Lately I always shuffle songs, but with one hand on the next track button in case the selected tune doesn't fit my mood (or meets with disapproval from a small person in the back seat).

I've read that smells have a powerful way of transporting people back to a certain place and time. But isn't it the same way with songs? A certain song comes on, and I'm instantly lying on the floor in my pink room, making mix tapes from the radio, playing and replaying my favorite songs so I can learn every word.

This post was inspired by Deborah Reed's debut novel, Carry Yourself Back to Me. The story follows 
heartbroken singer-songwriter Annie Walsh as she digs into the past after her brother is accused of murder. As a member of From Left to Write book club, I received a copy of this book for review. You can read other members posts inspired by Carry Yourself Back to Me on book club day, October 3, at From Left To Write.