Two Children, One Spectrum: A Collaboration

This week, I kick off a series in collaboration with Flannery of Living on the Spectrum: The Connor Chronicles.

This is a new series about two children on the autism spectrum. I will be writing about my son, Moe, and Flannery will write about Connor. We will explore similarities and differences in several categories and hope to show people how very different two people with the same label can be, and how important it is for services and supports to be individualized.

Flannery is hosting the series on her blog. Today, we're talking about communication.

I hope you'll check it out.

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.

Suffering is not a Spectator Sport

I've been thinking about something for a few days. I'm not quite sure if it's worthy of a full blog post or if I'll be able to accurately or adequately express these thoughts. But I'll try.

Kelli Stapleton, a year after she attempted to kill both herself and her daughter, plead guilty to first degree child abuse. Kelli's family has been in my thoughts for a long time. As the parent of a child with severe behavioral issues, this case evokes some pretty complex emotions for me.

This recent news has also brought up the same discussions (I use the term loosely) on Facebook, the same "you're with us or against us" battles between autistic adults and parents of autistic kids. I won't go into that today.

Because what I've been thinking about isn't that. It's about how we all have the liberty to talk about this. How freely we blame, and pontificate, and judge and analyze and criticize. And how, for all except a few who do know and care about Kelli personally, this all smacks of so much gossip. How it is so easy to just speculate and fill in missing pieces, and be outside of—and above—it all.

But if this were your best friend, if this were your family, if this were YOU (and no one should be so smug as to think it couldn't be), these horrible events would be nothing short of a tragedy. It would be devastating to so many lives that you cared about. The Stapletons are living this nightmare.

And yes, we can blame Kelli for the acts that brought them to this tragic place. Although I do believe this is a complex situation, and I do believe that ANY of us could be brought to a breaking point, Kelli is, in the end, guilty.

But how, with all our Internet Outrage, are we actually helping anyone?

While we're thankful that Issy has (from what I understand) recovered physically from the incident, have we succeeded in getting Issy a safe environment where she can learn and be safe?

How does it help Kelli's other children to call her a monster? Children who, while trying to come to terms with the destruction of everything they knew, also miss the woman who loved them more than anyone in the world?

And while we're bickering over when and where it is appropriate to have conversations about better family support services, how are we helping Kelli's husband, a man who now has a family to raise by himself, including an autistic daughter, and must need more support than ever?

These are real people we're talking about. This is not reality TV or some kind of spectator sport. This is a family who is hurting. And I hurt for them too.

Jelly Goes to Kindergarten

Alef: the first letter of
the Hebrew alphabet

 Yesterday was Jelly's first day of kindergarten. It was all the things I suppose the first day of kindergarten should be like. So much excitement at seeing some familiar faces, the chaos of figuring out where to line up, learning teachers' names and scoping out the new kids. I managed not to cry. My baby girl, in kindergarten. She said she wasn't nervous.

Today, the second day of kindergarten, was a little harder. No parents to accompany her to the classroom meant an extra long goodbye and a few tears I saw her fighting hard to keep in.

Jelly hasn't shared much about the days. I found out through another boy that she cried when the teacher spelled her name wrong (the woes of having a name that can be spelled multiple ways.) She fell on the playground. She learned some Hebrew but she doesn't remember what it means. She had art and her friend had music.

But I know Jelly. She has to process first. She won't come home recounting her entire day though I have no doubt she remembers it. Little bits will come out here and there when she's ready to share them.

This morning, as I prepared her lunch she told me about what was okay to bring for snack and what was okay for lunch. "You can't have too much food at my school," she told me. Later, "there are no mistakes in art, right, Mommy?"

She is the smallest one in her class, which means she is the smallest one in the school. That seemed to bother Jelly a little bit today. She can't climb as high as the other kids. As part of the under five feet crowd, all I could think was "get used to it, kid." I hope her big personality will make up for it.

She had an interesting observation about Hebrew, which is part of her school's curriculum. She had taken some Spanish classes in preschool so I asked her why she thought she could remember the Spanish words but not the Hebrew. "Because at Spanish they gave me a paper with all the words on it In Hebrew, there's no paper." I explained that this was probably because Hebrew words use a different alphabet, one that she doesn't know how to read yet.

This was an astute statement on her part. Jelly is a visual learner. This surprised me since her language skills, from vocabulary to reading and writing, are so strong. But Jelly learns to read even complicated words essentially as sight words. Even now, she still doesn't quite get the "sound it out" concept. So, by not being able to see the Hebrew words, she has a harder time remembering them.

Or maybe she's just not ready to tell me.

What Could Have Been

I watch Jelly playing with some nine year old boys at the beach. These aren't just any nine year old boys, these are my best friend's twins. They've known Jelly since birth. My friend and I talk about how remarkable it is that kids of very different ages can play together so well, especially at the beach. There's just something about digging in the sand.

It was a lovely family outing. Except it wasn't really a family outing, not for my family anyway. Jeff and Moe weren't there. Of course they could have come, they were more than welcome. One of the boys even commented that the was sad Moe couldn't come, because he knows how much he likes the beach. They're good kids.

These friends stay at the beach for a week or so every year. The first year we visited them there, Moe spent the entire time running straight into the ocean. It was a little scary but Moe loved it and was still pretty small. The second year was a little better. Two years ago, he just ran and ran and ran on the sand and when he wasn't running in the sand he was eating it and it wasn't much fun for anyone. Last year, we canceled at the last minute because Moe was going through a really rough patch.

So this year, we decided I would just bring Jelly. Jeff would take Moe to the pool so they would have something fun to do as well. Jelly and I had a great day. It was relaxing and fun and everything a day at the beach with kids should be. 

But a story was playing in the back of my mind. The same story I tell myself over and over again. 

Jelly deserves a big brother she can play with.
Why can't we take a family vacation to the beach?
This is how how life is supposed to look.

And then I feel guilty for not just enjoying the moment. For not believing my family is good enough as is. For resenting autism and focusing on all of the things we can't do.

I've been reading a book, "The Reality Slap: Finding Peace and Fulfillment When Life Hurts," based on Acceptance and Commitment Therapy (ACT). This type of therapy is different than Cognitive Behavioral Therapy in that "rather than trying to teach people to better control their thoughts, feelings, sensations, memories and other private events, ACT teaches them to 'just notice,' accept, and embrace their private events, especially previously unwanted ones." (Wikipedia)

ACT teaches that these "what if things were different?" scenarios are just stories we tell ourselves. I don't have to fight them, but neither do I have to give them any weight, especially when they aren't helpful. It's been a good strategy for me.

But it isn't easy. 

It's one thing to tell stories of what might have been in the abstract. I compare our most difficult times with others' perfect social media stories, or some notion of how things could have been. But during my day at the beach, I was experiencing that life. It wasn't entirely easy or perfect, but it was was infinitely closer to the family life I had imagine. The one I ache for.

Thankfully, the other thing ACT teaches is to treat ourselves with kindness and compassion. To recognize these feelings of loss and grief just as a friend would. So this week I'm working on that. On understanding that dealing with a life more challenging that I had expected is hard and that I am a work in progress. I am imperfect, but I am learning.

Positivity and Authenticity: A Blogger's Dilemma

As a writer, blogger, and participant in social media, I make choices everyday about how much to share of my family's lives. This responsibility takes on even greater meaning as I share the story of someone who is unable to participate in the sharing of his own story.

I do not take this responsibility lightly, but as someone recently called me, I am a staunch "defender of authenticity." I like to tell my truth on this blog, even though it doesn't always paint the prettiest picture of our lives.

Why do I do this? Well, for one thing it helps me. Blogging is, as they say, "cheaper than therapy"(though I pay for that too). Writing helps me process my feelings, and writing about even the hardest times lightens my soul and puts things in perspective. This also gives Jeff a break, since I can cry on my blog's shoulder once in a while instead of his.

Of course, I don't have to blog publicly to write my feelings, and I do keep a journal for more private thoughts (and a lot more swearing). But blogging also brings with it support. I get support from my community and I hope that I provide support for others.

On the other hand, I do believe I have the responsibility to correct some of the misconceptions about autism. Mainstream media outlets are quick to speculate, for example, about the autism diagnoses of the perpetrators of school shootings and this, among other stereotypes, is immensely harmful to the autistic community.

Media also love to share stories about remarkable individuals who "overcome" their diagnoses, or do amazing things despite their challenges. This is a more positive spin, certainly, but one that can be harmful in a different way. For one thing, these tales give a lot of false hope to parents like me, whose children may never have such accomplishments. For another, it sets the wrong expectation for the future needs of our children. Authenticity means being able to share a story of a severely disabled child who will grow to be a severely disabled man—a man who will require lifelong services, support, and resources.

Some bloggers just want to write happy blogs and there's nothing wrong with that. As for free therapy, research shows that people who express gratitude are in fact happier. According to Emmons & McCullough "in an experimental comparison, those who kept gratitude journals on a weekly basis exercised more regularly, reported fewer physical symptoms, felt better about their lives as a whole, and were more optimistic about the upcoming week compared to those who recorded hassles or neutral life events."

Others express the concern that their kids will one day read their blogs, and could be hurt to learn that their parents thought they were difficult. This is a real concern. But the truth is that in all likelihood Moe will never read this blog, although reading is a skill I long for him to have above almost any other. In case he ever is able to read and comprehend this blog, and because Moe is a person deserving of respect regardless of his abilities, I strive to always write first from a place of love.

Positivity and authenticity do not have to be in conflict. We have good times too, and I aim to share these more regularly. But I will continue to share the challenges as well. This parenting gig is tough, made even tougher with the uncertainties and struggles of autism in our lives. If there is anything I want other parents to know, it is that they are not alone. I never want someone to come here and think that if they are not all sunshine and roses, they are doing something wrong.

I Feel Your Pain

This is a post that has needed to be written for some time now.

If your kid was anxious or being bullied, how would you feel? Probably pretty bad. Your heart would ache, and though you'd be strong for your child, you would be crumpled inside. You would be heartbroken, yes? I would. It is how any loving parent might feel.

So why is it when a parent of an autistic child expresses their own pain as a parent, she is vilified?

If you are not involved in the online autism community, you are probably confused by this. If you are the parent of an autistic child, you are probably nodding your head. You've heard this argument before.

How can you possibly be talking about your own need for support? It is so much harder to be the autistic person. 

Pain is not a competition

My son's struggles are not mutually exclusive to mine. We can both be hurting, just as we can both be joyous or scared or hopeful or all of the above. I do not deny my son's challenges by recognizing my own.

Moe gets frustrated. His communication challenges make things very difficult for him. And when he is frustrated or unable to tell me that he is hurt, or uncomfortable, or bored, or he doesn't understand why I'm asking him to do something, or not letting him have m&ms at 7:00 in the morning, he can get aggressive. He cries, and bangs his head. He scratches me and bites his hand. He is strong and it is scary.

Of course I know he's hurting. Of course I know it is hard to be him. I am his mother, and I—as much as is humanly possible—feel his pain. I do not know what it is like to be him, but I see his struggle and I would give anything to make it easier for him.

Moe had three stitches in his forehead a few years ago, and, despite the numbing cream, screamed out in pain at each needle poke. I did not feel his physical pain but I will tell you this: if I could have taken that pain instead of him, I would have. It hurt me to my core to hear him scream. I remember that sound perfectly, though Moe has certainly forgotten it by now. This is no different.

Your feelings are legitimate

You are allowed to have feelings.

Let's say that again. You are allowed to have feelings. Not just your kid. Not just everyone around you. You.

Let's get real for a moment. Raising Moe is really hard. We have no real schooling options. We have made a decision to try some pretty serious medications to help keep Moe from hurting himself and others. I worry about Moe's future and the lack of housing options for him as he grows.

And it is really, really heartbreaking and stressful when your child attacks you. And it is even more heartbreaking to see that child hurting his sister, or himself.

So you know what? I get to feel those feelings of fear and stress and heartbreak as they exist. They are genuine and legitimate and no one gets to tell me otherwise.

Feelings are not inherently good or bad

Feelings just are. I can control how I react and use those feelings, but I cannot help having them.

So what?

Why is this important? Why give voice to what might seem a ridiculous discussion to anyone outside of this community? Because these kinds of arguments are tearing apart a community that should be working together. Because when you tell a mother that she shouldn't feel stress or anger or grief, you don't change her feelings, you push those feelings to a place of guilt and shame where they will simmer until they boil over. You deny a father the support and help he needs to be able to put his energy into helping his children. Because ultimately there is no one else. We as parents bear the burden and the joy, the responsibility and the privilege of caring for our kids.

And we're doing the best we can.

Top 10 Things I Learned at BlogHer. Okay, top 11.

I just returned home from BlogHer '14. This was my second BlogHer conference, and although nothing can compare to your first BlogHer, I still learned quite a lot. Here are my top takeaways from BlogHer '14.

1. It is okay not to want to "monetize" my blog or promote brands, unless I'm promoting my book.

2. It is time for me to start my book.

3. There are really interesting changes happening in the publishing world and when I do finally get that book finished there are several ways to consider publishing that. I plan to write a post on that soon.

4. Twitter is still relevant. Especially if you are trying to find your friends at a blogging conference.

5. My blogging/Facebook/Twitter friends are also fantastic people in real life.

6. Some conversations are better had in person.

7. There is power in storytelling.

8. Kara Swisher is really smart and funny. So is Arianna Huffington.

9. I really need to get one of those portable charging devices. I spent a good amount of time sitting in the hallway with my phone plugged in, getting my power fix. This one from MyCharge seemed to be a pretty good one.

10. Jeff is a really great dad and husband who enables me to go to blogging conferences and come and go as I please for three days while he watches the kids, takes care of bedtime, meals, and swimming lessons. He didn't complain about it once. I know I would if he left for the better part of 3 days.

11. Although I definitely want to keep blogging, it is time for me to evolve this blog. I am not giving up on it, but I will be making changes. It could be a while, and I plan to do it slowly and carefully. Now I have to figure out what those changes should be. Feel free to make suggestions.

I met so many friends, new and old, but I want to give a special shout-out to these writers and friends who are as wonderful in real life as they are on their blogs: 

Adrienne from No Points for Style
Jill from Yeah. Good Times (and a Voices of the Year 2013 winner!)
Lexi, formerly of Mostly True Stuff, but who will be announcing a new blog soon
Kristin from Running to be Still. I am still figuring out how I can keep her from leaving the state.

And a new friend, Jen from Born Just Right who is just all sorts of awesome. And I don't use that word lightly.

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.

Still Blogging

It's been a while since I've blogged here, a couple of months, at least. But since I'll be attending the BlogHer conference in another week, I thought I should post something, so I can still call myself a blogger.

Life is chugging along. Moe had several very rough months. We saw a heightened aggression from him, coupled with some very frightening new self-injurious behaviors. Moe was not only biting himself, but he also started banging his head—hard. We thought it was related to some new molars, but the behaviors continued long after that was done. He gave himself a huge bump in the middle of his forehead. He put his head through the wall. We did everything we could to keep him safe, but when we would stop Moe from banging his head, he got mad and would turn his aggression on us, his nannies and his therapists. Behavioral interventions were not working.

So we made the very difficult decision to try a new medication. This is not a decision we took lightly, not only because medications can have serious side effects. Not only because Moe has such difficutly learning and communicating that we need to make sure he is as clear-headed as possible. But also because we've been here before. Last year, we tried Tenex (as well as the related drugs Clonidine and Intuniv). This was disastrous. Behaviors and sleep got worse. I didn't want to get burned again.

After several months of trying everything else we could think of, we started a new drug, Risperodone. I don't share this information lightly, as it is, in some sense, very personal information to share. But I share it because I have learned from others' experiences, and I hope others can learn from me.

So far, Moe is doing well on the drug. The biggest change is that he is falling asleep on his own, and staying asleep. We are no longer using melatonin, which seemed to make Moe really unhappy anyway. This, in and of itself, is an enormous benefit for the entire family. Jelly is also back to sleeping through the night. She, like Jeff and I, had become accustomed to 3am wake ups.
For the first month or so, behaviors dramatically improved: no more head banging, increased attention, less frustration and impulsivity. But it's not perfect. Moe seems upset many mornings, and the last week or so, we've seen some gradual increase in behaviors. We're taking data, and may increase the dose if necessary.

Most importantly, we found a doctor we like, who knows kids like Moe and wants to help. We are watching for the side effects, the most common of which is increased appetite leading to weight gain (and perhaps some link to increased blood sugar and diabetes). But so far, he's doing okay.
What else is going on? We finally decided on a kindergarten for Jelly and are excited about the start of the new year in just 5 weeks! I cleaned out the enormous amounts of clutter in her room (she saves everything), went on an Ikea shopping spree, and set up a new "big girl desk" area in her room, complete with pink chair, and many pink accessories, as well as an "Elsa blue" lamp. She's growing up so fast, and while each year with Moe seems hard-won, some days I feel I can hardly remember so much of Jelly's life.

I have a lot of things to say about a lot of things: Jelly's evolving relationship with Moe, life at a start-up in Silicon Valley, how we're doing with AAC (hint: we need a new approach), the intense feelings that come with living with a very aggressive child, the insantity of the Bay Area housing market. But this post has gone on too long already.

If you read this, thank you. If you'll be at BlogHer this year and want to meet up, send me an email to wantapeanutblog [at] gmail. I'll be at the special needs MiniCon as well.

Posted with Blogsy

The Uncomfortable Truth

I'm in a Yahoo! group for parents of special needs kids. It is a great group, made up only of parents—no professionals, teachers or anyone involved in providing services for special needs kids. The needs vary in type and severity, but the feedback on local providers, school districts and classrooms is invaluable.

But as with any group that is both varied and on the internet, the occasional heated debate arises. The most recent one erupted over a local event about raising siblings of special needs kids. The event is called "I'm Important Too" and the description includes this line: "Living with a child with special needs is tough on families, especially for typically developing siblings who may sometimes feel forgotten or less loved."

Well, this caused quite a bit of outrage. Sure, the group is intended for parents, but how would it feel if you were a child (or adult) with special needs and read that you were "tough to live with?" Not great, I'd guess.

I will speak only for my family now. The truth is that Moe is very tough to live with. He requires constant supervision, is self- injurious and aggressive toward others, including the dog and on occasion his little sister. I cannot count the number of times I've had to tell Jelly "in a minute, Moe needs me right now" or the things we cannot do because Moe's needs make it impossible. These include travel, playdates, eating out or going to the movies as a family, to name just a few. It is not his fault, but it is reality.

Jeff and I are stressed, stretched thin, on constant alert. We do a lot for Moe because we love him, but also because we have to. Make no mistake, we are not heroes in any way. We have no choice.

And it is hard.

I need, and have found, several safe places (including this blog) where I can say that. And as Jelly gets older, she is going to need several safe places to say that too. She is going to need to shout from the god-damn rooftops that living with Moe can be really really fucking hard. I'll even allow the swearing. Because it is, and no good will come from sugar coating that. She needs to know that she is heard too.

She also needs to know that we love Moe despite the fact that it is hard. We love him for who he is. His life has value and brings us great joy. But living with him can be difficult, and she is not a bad person for feeling that way, if she does indeed feel that way. Perhaps she won't.

News broke of another case of a mother who killed herself and her adult autistic child. These cases are heartbreaking. They also bring out the rage of a heartsick disability community, who blame the portrayal of autistic people as "hard to live with," as leading to a mindset that accepts these murders as okay. They believe that the parents and the media make these murders excusable by painting the act as somehow understandable or the autistic person's fault. It is neither, of course.

But I do not believe the answer is to hide the fact that autism can create a terrifying existence for some. I do believe that the media, lawmakers, families, insurance companies, policymakers and autistic self-advocates need to know that keeping these kids safe means keeping their families safe too. It means shouting loud and clear that for some living with an autistic family member can be hard, even near impossible. So impossible that some parents see no other option but death.

Because there is no safety net. Not for these kids and not for their parents.

Moe is almost seven years old, and he's a small kid. But he's strong and someday he'll be too strong for me to handle. We are working hard to help Moe get the communication skills to tell me why he's mad or frustrated. But if I'm no longer able to keep him safe, or his sister safe, or myself safe, what do we do?

Someday, for one reason or another, Moe will not be able to live with me and Jeff anymore. So tell me. Where will he go?

This is not a rhetorical question, one that I hope to have many years to figure out but one that nevertheless weighs on my mind and doesn't seem to have any good answers. But maybe, if I shout my pain as loud as I can, if I tell everyone that living with an autistic child can be really, really tough, someone might help build those safe places. So we all can be loved and cared for. Moe especially, but the rest of us too. We all have value.

So I say it again. I love Moe with everything I am. But living with him is really hard.

It may be uncomfortable to hear. But it has to be said.

Read also a related post I wrote last September: Making Positive Changes in the Wake of the Stapleton Tragedy

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.

The Pain of Childhood

I wore long sleeves today, despite the 80 degree weather. Didn't want anyone at work asking about the fresh scratches on my arm. I mean, they know, but sometimes it's easier not having to explain. The scratches sting a bit under the light fabric of my blouse. At home now, I hold a cool glass of wine against my skin.

Moe is going through another round of aggression. But it's worse this time; he's not just hurting me and Jeff. He's hurting himself too. His forearm is bruised from where he hits it agains the edge of the table. He's been hitting his forehead as well, on the couch, the rug, and—scarier still—against the sliding glass door or the bathroom counter. So far, we've kept him from truly hurting himself.

He goes from aggressive, to sweet and wanting hugs, to insisting on some pretty hard pressure on his head, back to aggressive when I'm not doing it just right. I know he's just frustrated, but it's hard not to take it personally. I'm only human too.

This has been going for on a while now, maybe a month. Jeff took Moe to urgent care a couple weeks ago. There was no ear infection, no strep throat, no other obvious issues. They didn't exactly dismiss us, but did suggest that we work with the doctor who "treats him for his autism." I'm not really sure who that is. But we know this is more than just behavioral. More than just autism.

We worried about headaches. I started to wonder if maybe we needed to get an MRI. Perhaps some tumor (maybe one that has been causing all his delays?) was causing some pain. This is the screwed up life I lead, almost hoping that he would have a tumor, then quickly banishing the thought, guilty for it even crossing my mind. But it would be an explanation as to why all of this is happening to Moe. That's the bargaining stage of grief, I'm told.

We got an answer on Monday, at least we think we did. We took Moe to the dentist guessing that perhaps he had a cavity. It seems he is getting new teeth. I forgot about those "six year molars." It makes sense, the pain that comes and goes, his asking for pressure on his head or near his ears. It helps, knowing the reason why, that this too shall pass. And yet, I feel resentful that something so simple, such a part of normal childhood development, could cause so much havoc on the entire family.

And Moe, poor Moe. The only way to tell us he is hurting is by hurting himself more. I tell him I want to help him. But I don't know how.

It was the best possible outcome: an answer that points to something concrete, but not serious. Still, we are all wrecked, rung out, exhausted. And bracing ourselves for at least several more days or weeks until this tooth is in.

I can't even imagine what is going to happen when he starts losing his baby teeth. It won't be long. Moe turns seven next month.

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.

I Think Applying to College Was Easier

There are a lot of things I feel like I should be writing about. Another celebrity who read stuff and has decided that she's an expert in epidemiology and shouldn't vaccinate her children. Another round or twelve of autistic self-advocates vs parents, shouting in circles at each other, never really listening, never really understanding that they are, for the most part, on the same side. The internet outrage machine blabbers on and on.

It's exhausting. I've been staying out of the fray for the last few months. I don't have the time to keep up with my friends so I certainly don't have time for any of that bullshit. I've stopped reading several pages that repeatedly make my blood boil and my head hurt, and I'm better for it. I highly recommend the therapeutic effect of the unlike button.

It's not that I don't care about these issues. They affect me, my friends, and my community. They affect you too. I have many half-written posts on the blog and in my head on several important issues. But at the end of a busy work day, I really just want a glass of wine and an episode of House of Cards.

The time change isn't helping either.

But I have a few moments right now, sitting with Jelly while she takes a bath. So I will tell you about a situation that I know I am fortunate to have, but that is adding another level of uncertainty to our lives these days. Remember when I wrote about our school choices for Jelly? (If not, you can catch up here.) The private school we were hoping for just sent out their decisions, and she was—wait for it—wait listed. Which makes me laugh because it's f-ing kindergarten and because what the hell are we supposed to do now?

Jelly was accepted to another private school, one that would be very good academically but I have a couple reservations about. It is our best current option, but if we take that spot we risk losing a hefty deposit if she later gets accepted to school #1.  If we don't take that spot, we risk not having a spot at all, which means one of the public school options, with the only guaranteed school being the one we are least excited about.

So I am once again left wondering why nothing can ever just be simple.

We told Jelly today the she probably wouldn't be going to school #1, and she was disappointed. She mostly liked the playground, and the art room with a how to draw princesses book. Playgrounds are everywhere, but that school does have a pretty fantastic art studio. Maybe next year.

Ways to Connect

I've been struggling with figuring out how to connect with both kids. I've been struggling with the idea that I may never have a conversation with Moe of any sort, let alone a meaningful one. I know there is always hope but I have to be able to live with the current state as well.

And Jelly, who is an open book, is too much for me sometimes. She talks non-stop, has been testing us like crazy (“no I won't!”) and wears my patience thin. And yet, I cannot adequately explain my depth of feeling of connection with her. She is mine - and it is funny because when she was born, I didn't feel like I had the same connection with her I had with Moe. He was my little guy, and she was the intruder. Now I can't imagine how I could ever be without her.

So I've been trying to notice the ways I can connect with Moe, even without conversation. And like he knew I needed it, he did something the other day that he's never done before. He walked up to me. I flinched a bit, as I often do, with the anticipation of some sort of aggression or demand. But instead he leaned in, wrapped his arms around my legs and pressed his head into me. 

He hugged me.

Then I knelt down and opened my arms. He came in and hugged me all around. He squeezed hard. It was the best hug I've ever had in my life, truly. And then it was over, and despite my every attempt to get another one, there hasn't been one. I can ask Moe for a hug and he'll kind of lean in, arms down, and let me hug him, but until this weekend he had never come over to hug me.

There is so much pain in the realization that my six year old has never really hugged me before. But also so much joy in that small moment.

I had a great moment of connection with Jelly this weekend too. We were in the car together on Friday on her way home from school. She asked to play the soundtrack from Frozen, and I turned it on. We were riding down the highway, both singing along together. It made me so happy. I hope it made her happy too.

Musical Memories

I recently got a new car and still have the free trial of satellite radio. During my commute, I like to flip between channels 7, 8 and 9: the seventies, eighties and nineties channels. I love how I can go from American Pie to Gin and Juice in one car ride.

One of my new goals with this blog is to start recording some of my childhood memories. And music brings back such powerful memories. The last two nights, on my commute home, I've heard Billy Joel songs.

I was never a huge fan of Billy Joel growing up, but his music was really popular in the early 80s. I'd never decide to listen to his music now, but the 80s channel played two songs I couldn't switch off.

Me, circa a really long time ago.

The first was Uptown Girl. Back in the ancient days of my youth, I attended a summer camp for young teens. Every day we went on a different field trip, from the movies to the beach. And every other week, we went on a camping trip. It was perfect. I made some great friends there, had some of my first crushes, and met the first guy I would "go with."

Side note: He now owns an amazing photography studio in L.A. I won't embarrass him here, some of my readers will know who I'm talking about. (And if need a photographer recommendation in the Los Angeles area, please send me a message on my facebook page. He and his wife are truly fantastic.)

Anyway, on one of these camping trips, we had a talent show, and this boy did a lip sync performance to Uptown Girl. I was the girl, and sat in the camp's big bus, wearing cool Ray Bans or knock-off Vuarnets or something, and there was some big reveal where the bus pulled up and I was sitting at the open window. I don't remember exactly. But I felt pretty damn cool.

The other was The Longest Time, which has this 1950s doo-wop feel. My dad loved this song, and at the time my dad, my brother, and I were all taking music lessons. Billy played piano, I played flute, and even my dad had picked up the clarinet he played when he was younger. We all had the same music teacher, and at my dad's request, Mr. B wrote the parts for all three of us to play The Longest Time together.

Honestly, I don't think we ever really nailed it as a trio. As far as I can remember, we played the thing just a couple times all together, and I'm pretty sure no one ever made a recording of it. But I remember the effort, and I would bet that hand written sheet music is still in the piano bench at my parents' house.

Many Moving Parts (AKA Life is Complicated)

As I've mentioned before, Jelly starts kindergarten next year. And while I expected it to be easy to find a school for her, it isn't. Our options are:

1. Send her to our local public school, which we're not thrilled with.
2. Send her to the public charter school, which we're going to see tomorrow, but will likely have it's own issues.
3. Send her to private school.

But it's even more complicated than that. We also trying to move, and we have to figure out Moe's school.

We'd love to move into a better district for both kids. But a better district means more expensive houses, and a very competitive housing market. We might find a house we like in a district we like but still get outbid. Most houses here get many offers, go well over asking price, and are usually all cash, no contingency offers.

We did find a private school that we really like for Jelly. But they have very few open spots so there is a possibility she will not get in. (Though who wouldn't want her? Seriously.) And it is a bit farther than we'd like, although it is on my way to work. If she gets in, we could move closer. But if we moved closer, we'd also be in a better school district, which means we just dropped a lot of money on a new house and we might not need private school. Or we still might not like the public school, which would be a very expensive and disruptive option.

We could stay in our current house, which has the distinct advantage of being the house we live in right now. The house is small and we really could use more space. But it is a nice house and basically Moe-proofed. If we stay, the schools aren't great for either kid. We know the program isn't appropriate for Moe, but if we do decide to fight for a non-public placement, at least it is the devil we know. If we move, we will be starting over, for better or worse. The programs could be better for him, but we really only know their reputations. You don't really know until you get there.

I'm also commuting and our goal has been all along to move farther north, which would make my commute shorter, and Jeff's longer—but he'd be going against traffic. But then, we're back in the better schools means more expensive houses, means... You get the idea.

As I said: it's complicated.

Finding the Right School

Moe does not currently attend school. He is homeschooled, and we have crafted a program that we think best meets his needs right now. As I have written about before, our district program is not appropriate for him. They do not agree. If we want him back in school, we either have to move; send him back to his old school, allowing him fail so miserably it is obvious he needs a non-public placement (which we are not willing to do); or sue the school and hope we win. We're trying for the first option but the Bay Area home market is nothing short of ridiculous now.

But this is not news.

Now we have another challenge. Jelly starts kindergarten in the fall. Our district has some great schools but our home school, which is just at the end of our block, has a mediocre reputation. Still, we hoped that would be a good option for Jelly. Friday, Jeff and I went on a kindergarten tour. And we quickly realized that this is not the school for her.

There are several reasons, but it is enough to say she won't be going to our home school.

Like with Moe, we also have three choices: we can move (see above fact about ridiculousness of Bay Area home prices); try to get into the district's charter school, which we'll be visiting on their tour date later this month; or send her to private school. And while the cost of private schools around here is roughly equivalent to buying a new car every year, it is probably still less insane than the housing prices.

So we've been touring private schools. Some of these schools are remarkably beautiful. Some have chefs, as you'd expect for the children of Google and Facebook employees. Others have wonderful philosophies but are tiny, without a decent social atmosphere. And others are, well, specific. There are several bilingual immersion schools, Waldorf and Montessori schools, several religious schools, and even one based on mindfulness.

But what strikes me most is that we have a choice. With Moe, all our choices have, in effect, been taken away from us. And while we want to make the right decision for Jelly—we take it very seriously, in fact—we do know that she will be probably do well anywhere. And if we choose a school, and it isn't right for her, we'll change. There are options.

Why is it that the kids who have the greatest need, for whom the stakes are so much higher, have so few options? That the kids who truly need a specialized, individualized education, receive little more than lip service to that effect? When it comes to Jelly's education, we get to find what is best, while with Moe it is only what is appropriate?

Ponder that for a while. I'll be filling out kindergarten applications.

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.

New Year, New Direction

It is no surprise to my regular readers, if I still have any, that I haven't been blogging on a regular basis. I'm not going to make excuses—I just haven't made time for it. And though I know my writing seems effortless (yes, that was sarcasm), it usually takes me an hour or two, sometimes more, to write a decent post.

But I don't want to abandon the blog. So I'm changing focus a little. Instead of writing longer pieces, I'm just going to share shorter thoughts or snippets from our days. I'll still be mostly focusing on Moe and our interactions, but I'm working now, so sometimes it will be about that. And of course Jeff and Jelly will make their appearances too. Jelly has been amazing lately, so funny and cute, and I don't want to forget any of it. I've also been looking for a place to write some of my own childhood memories, so maybe those will show up here as well.

Moe has had a rough couple of weeks. Even though his schedule wasn't affected too much by the holidays, Jeff, Jelly and I have certainly been around more. We have a new nanny, and friends came over for New Year's eve, and all of this led to a dysregulated little boy and lots of hair pulling, scratching, and even more upsetting, some self injurious behaviors (SIBs) that we've thankfully not had too many of in the past.

But yesterday Moe was jumping on his bed. I went over and took his hands and we stood about eye level with each other. I leaned in and gave him a kiss. He was so happy, he asked for another ("ma ma" which could be "more" or could be "mommy") and then actually puckered up (as best he can—it varies between duck lips and a smile) and kissed back. As you might guess, I could have done this all day, but he only did it twice, then went back to jumping.

Hope you all had a great holiday season, or at least got through it the best you could Here's to finding joy in moments small and large this year.