December 29, 2015

Changes for 2016

I'm tired.

The last part of this year has been rough. Moe had a period of intense aggression and self-injury. It was an awful cycle that we couldn't break for almost 2 months. We had to get a helmet so he couldn't bang his head as much. One weekend we took Moe to the emergency room because we couldn't get him to stop attacking us. The shot of Ativan helped for a couple of hours. Then right back to it.

The doctor ordered an MRI, something we've put off for a while because it never seemed really necessary. It showed nothing unusual. Which was good. But it was also kind of disappointing. I wanted to point to a black and white picture and say "There. See that? That's what causing Moe to not be able to speak. That's what causing him pain. That's why he hurts himself. That."

And then we could fix it.

Eventually Moe felt better and for the most part stopped hurting us and himself. We aren't sure exactly why. But Berkeley, our dog, started having trouble walking. It was spinal, maybe a tumor. Pretty quickly she couldn't stand without falling over. Her last day was December 3. She was a big presence in this house, never an easy dog, but she was ours for more than 12 years. And we miss her terribly. I still feel the weight of her head in my lap, and the soft ears she loved to have rubbed.

Moe isn't as violent anymore, though he still has a moment or two. Sometimes I still flinch when he comes close. And my heart skips a beat whenever he slams a door. He gets really whiny in a way that will grate on your every last nerve.  He can be impulsive and bouncing off the walls hyper. Moe needs to be watched every single waking moment. And while we have done our best to make the house safe for him, we find ourselves saying the same things over and over and over.

"Come out of the kitchen."
"You already had a bath today."
"No ice cream for breakfast." (Though I can't really blame him for trying.)

And he's been waking up in the middle of the night almost every night.

We are all exhausted and emotionally spent in a way that's hard to describe. Jeff and I both long for the escape of work, thankful for challenging jobs we enjoy and that allow us to have help at home. Moe's nanny is a true angel.

We really need something to change, and fortunately, something is going to. After 3 years of homeschooling, Moe is going back to school. It's a scary and very exciting step for him. We think it is the right time. We have no idea how the transition will go and it will be logistically challenging having both kids at different schools. But we hope adding this new level of structure and activity to the day will be beneficial to his learning, sleep and regulation.

2016 is going to start off in a big way. We're ready.

November 17, 2015

Day 17: Do not read this if you love rodents.

Friends, today was a tough day. Not for me, so much. But for a rat.  This was not a pet rat and it didn't have a name. Though I suppose we could call it Number 5.

Several months ago, I found some rat droppings in the garage. It was, it seems, feasting on the dried pasta and dog treats I had on my makeshift pantry shelves. We cleaned up the area and removed anything but canned goods. Problem solved.

Okay, no. Obviously the problem wasn't solved. These little fuckers decided they really like my garage. And expensive dog food. LifeSourceⓇ bits were sustaining rodent life. We cleaned up after ourselves. Made sure not to drop any food.

Until one day when I walked into the garage and saw little pink plastic shavings on the ground from where the rat chewed through the food bin. Not a bag of food, but a solid plastic bin. We tentatively opened the door, expecting to see a rat eating to its heart's content at the Blue Buffalo buffet. Thankfully, it had already left. We left a trap on the floor near the food bin and within a couple days, caught one.

But that wasn't all of them. I guess it never is. Every so often, I'd turn on the light to the garage then open the door - always in that order - and see a streak of gray running across the floor and under one of the cars. I don't care how much laundry needed to be done, I'd just close the door and stay in the house.

We did more cleaning, even checking the earthquake supplies. We cleaned everything but eventually took to keeping a loaded trap on a top shelf. Every so often, we'd go out in the morning and the trap would be gone. It would snap, and flip off the shelf, leaving it to me and Jeff (okay, Jeff) to play find the dead rat buried in the junk in the corner of the garage.

We got a new and improved food bin for the dog food but we'd still find occasional evidence of rats. I picked up a gel mat for the kitchen that had been in the garage, only to find it chewed up. We found a chewed up roach trap. (There's so much wrong with that statement.) But it had been a while since I'd seen one or caught one. I forgot the trap was even there.

Now, this is the time in our story when I need to take you on a journey, back in time about twenty years. I was in college, living in a small cottage with a roommate. This cottage was, shall we say "shabby chic," literally insulated with newspaper. And at one point, we discovered that a rat was getting in the house. Through a hole in the wall. It was near the holidays, I believe, and we were going out of town. We laid down a sticky trap and left.

Upon our return, we opened the door carefully, turned on the light, and checked our trap. It was gone. Moments later, a large rat, back two feet stuck in the trap, front two out, ran across the cottage, dragging the trap behind it. In the commotion, it had picked up one of my slippers, which was now also stuck in the trap. We called our landlord, who "took care of" the problem. And also returned my slipper which, looking back, probably wasn't necessary.

This morning, Jeff had already left for work, and when our nanny arrived, I went to load the car so I could take Jelly to school. I opened the door and let out a gasp as I saw a rat in a trap in the middle of the garage. I closed the door and walked back inside.

Shit. I was going to have to deal with this. I told Jelly to stay inside. I could empty the trap. It was just a dead rat.

Except it wasn't. It was still fucking alive.

There was no way in hell I was going to pick that thing up and release it from the trap while it was still alive. I was also not going to use any of the large shovels or things in the garage to help it on its journey. I felt awful, but knowing it would be dead soon I did what any strong, independent woman would do: I put a cardboard box over it, got Jelly in the car, and texted Jeff that he was going to have to deal with this when he got home.

I also warned the nanny not to lift up the box. She even offered to deal with the rat. I told her that wasn't necessary. This, my friends, is called foreshadowing.

I came home from work as twilight was descending. I had all but forgotten about the rat, and was bringing in the trash cans when I noticed the boxes were moved. I smiled, realizing that our nanny did take care of the rat for me. She's the greatest.

And then the box moved. What in the ever loving fuck was that? The rat couldn't still be alive, could it? Maybe it was one of its rat friends, coming to leave flowers at the scene? The box moved again. I was frozen. Or stalling until Jeff got home.

I flagged him down as he pulled in the driveway and told him what was going on. I had yet to actually look in the box. He grabbed the sledgehammer and told me to take Jelly inside. I did what I was told. When I did, I went inside to learn that the rat had been running all around the garage, head stuck in the trap. Our nanny eventually put it in the cardboard box. I felt awful. For her and for the rat.

Meanwhile, Jeff was outside doing man's work. And by "man's work" I mean Googling the most human way to kill a rat. Which, it turns out, is by asphyxiation by CO2. You too can create a little rodent death chamber with vinegar and baking soda.

I'm sorry, Number 5. Rest in peace and may you find plenty of expensive dog food wherever you are.

November 12, 2015

Day 12: Why I still don't have a tattoo

I don't have any tattoos. I attribute this to several things:

  1. I'm kind of a chickenshit.
  2. I'm Jewish and even though I don't believe in God (now there's a good post for another day), I do have an overactive sense of guilt. Jews aren't supposed to get tattoos. (I also feel a tiny bit guilty every time I eat bacon though I've never kept kosher a day in my life.)
  3. My parents would be disappointed in me. Yes, I am over 40, have 2 kids and live 400 miles away from them. Why do you ask?
  4. Fear of making a bad choice. If I had gotten a tattoo back when I first wanted one, I'd be considering removal of a Winnie the Pooh and Piglet themed tattoo on my hip. I also definitely wanted Depeche Mode Violator and Hedwig and the Angry Inch Origin of Love tattoos. Which might have been cool. At the time anyway.
But I'm older now and while I'm still not so big on pain, I do know exactly what I'd get. I think I'd be ready to put all of the other reasons aside for this one. But the reason I want this tattoo is exactly why I haven't gotten it yet.

I have no desire to get an autism tattoo, by the way. I've seen some cool ones, but I'll leave the puzzle pieces for someone else.

This tattoo would be something to remember my brother by. Something that was between us and that would be cool even if you didn't know the meaning but that would make me think of him every time I saw it. Of course I think of Bill all the time anyway. I don't need something to remind me. But it would be something I could touch, and show, and talk about. Forever.

I don't think Bill would ever have gotten a tattoo. He wasn't especially religious, but certainly more than me. While that could have changed a lot by now, and I don't think he'd really care if I got a tattoo, it isn't something he necessarily would have done. So to have a tattoo to memorialize him poses a bit of a conflict for me. It probably shouldn't, since this is for me and he's not around to see it. But it does anyway.

November 11, 2015

Day 10: In Case of Emergency

There's been another case of murder suicide in the autism community. A single mother killed her 14 year old son and then herself.

This is not the first time this has happened and sadly it won't be the last. Events like this split apart the autism community, with cries of "parents need help" battling the idea that any hint of understanding is no less than condoning murder. I'm not going to take up that argument here. I've written about it before and that's not what is on my mind today.

Right now, I'm thinking about a friend. Her son is in the middle of a psychotic episode. He's been checked into the hospital, after having to be restrained by several adults in the emergency room to keep him from hurting himself and others. He's refusing medication. He's 9 years old.

The scariest part is that he's likely to be sent home. The doctors will manage to sedate him, keeping him good and medicated for a few days, and they'll send him home. Where he is so loved, but also feared. Where he doesn't have an appropriate school placement because if doctors don't know how to handle this, how could teachers possibly know? And that's at the good school. Where his psychiatrist will once again tinker with his meds and hope to find something that will keep him stable for a while. And where his parents will white-knuckle it until the next time, hoping they can keep him - and their two other children - safe.

And then what? I have another friend whose elderly parents are still caring for her adult schizophrenic brother. He's been in the emergency room so many times from overdosing and the only hope for relief was for him to die. But he hasn't died. And when her parents do, he's likely to end up homeless. They love him so much they're completely broke from his lifetime of treatments. And even though by all accounts they cannot physically care for him, they do it anyway. Because what choice do they have?

Moe is different, of course. Autism is different. But I do understand that there's no lonelier feeling than being in a room alone or with a partner, helping your child through a meltdown the best you know how, and thinking this is it. This is life now, with no one to help and no way out. You might as well be lost in the desert, your throat dry, every oasis a mirage.

November 8, 2015

Day 8: Living in the moment

We had a really rough weekend not too long ago. I won't go into the details, but it left Jeff and I reeling, and asking some really hard questions.

Later that week, things improved and have been stable, though certainly not perfect, since. Still, whenever Moe is awake, we are on guard. We are always watching to make sure he isn't about to get into something he's not supposed to, or hurt himself or someone else. Even when he's calm and happy, he's pretty needy. I supposed we all are, but we are able to help ourselves or at least communicate what we want. Moe communicates by leading you to where he needs to go, or showing you what he wants or, if frustrated, whining or shouting or worse.

When Jelly says "I'm hungry," I can say "Just a minute and I'll get you something." I finish what I'm doing and then help her. When Moe is hungry, and points to the kitchen, there's no "just a minute." And I get it. If he doesn't understand the concept of "wait a minute", and I don't get up right away, he's anxious that he's not being understood. If I'm watching Moe, I can't stop and finish the sentence of the book I'm reading or help Jelly through one more math problem on her homework. I have to get up and take care of him or risk an escalating situation.

Despite the challenges, there are still many moments of laughter and love. This morning when Moe woke up, he came straight into bed and snuggled with me. There were no demands, no iPad between us or guessing game as to what he needed.  Just me and my son. Those moments don't happen nearly enough, but they do happen.

I have a hard time letting those moments carry me through the tough ones. Even now, after 9:00 at night, I had to take a break from writing this to go help Moe through a meltdown. And when the day ends on a bad note, or there are rough spots during an otherwise good day, it is hard to brush it off and move forward.

I think the people who are most successful at finding peace and happiness through challenging parenting journeys are those who are able to live in the moment, leaving the tough spots behind when they're over and fully relishing the good moments when they come. It is something I'm working on.

November 6, 2015

Passion in the workplace

Sadly, this post will not be as steamy as the title implies. Though I did meet my husband at work, and I've heard of more than one rendezvous in the server room, that's not the kind of passion I'm talking about.

I recently had the opportunity to volunteer with a company called Toolworks in San Francisco. The organization provides many services, including employent, for adults with disabilities, as well as those who are homeless or at-risk. They also run a bakery that not only employs some of their clients, but also brings in money for the organization.

As part of a skills-based volunteering program at work, I spent a week last summer at Toolworks. I and two co-workers spent a week at Toolworks redoing the website for Hayes Valley Bakeworks and setting up some analytics and search advertising campaigns for them.

There tends to be an arrogance in corporate American, and especially in Silicon Valley. We think that somehow we're smarter than the rest of the world. We think about what corporations can teach nonprofits about how to run more efficient businesses. I came away from my week at Toolworks thinking also about what nonprofits can teach corporate American. Here are a couple of those lessons. I'm sure there are more.

You've done enough today. Sometimes I'm overwhelmed with the amount of work there is to be done at my job. Silicon Valley tech companies like to try to solve big problems. And we need to do it faster and better than anyone else. But the work we have, with seemingly endless resources at our disposal, is not nearly as difficult as the type of work nonprofits have to do. These organizations serve populations who have the greatest level of need and the fewest resources. Caring for people who are homeless, who struggle with mental illness or developmental disabilities is a really hard job, and no one's getting rich doing it.

I met one of the Toolwork's clients, who has a full time aide provided by the organization. Because of her help, this client is able to live in an apartment with a roommate, communicate with others, and live as a part of the community. No one organization is going to solve homelessness or the housing crisis. Sometimes the small picture is what's important. Make an impact every day.

Passion: I do not think it means what you think it means. In Silicon Valley, we talk a lot about passion. Interview candidates are often rejected because "they're just not passionate about" television, or cell phones, or B2B cloud solutions, or whatever the company is doing. Is that what we want people to be passionate about?

I really love my job. I think the work we're doing has value, and it's exciting being around new technology. My company makes a thermostat. Am I passionate about thermostats? Not really. But I do think climate change is something to throw some passionate energy behind. People at my company are doing all kinds of projects around topics worth getting passionate over like equal access to information and improving healthcare.

Not everyone can be passionate about what they are doing at work, and that's fine. If you are happy and do a good job, I really don't care if you're passionate about analytics or advertising or meeting fourth quarter expectations. But if you are going to be passionate about something, or if we're going to demand passion from employees, make the work matter.

November 4, 2015

Day 4: Aging out

It's almost 10:00 and I've been working on a project for work. As I was closing the computer for the night I remembered that I haven't posted anything yet today. Fortunately, I have a pretty short post.

I want you to think about something. I want you picture in your head someone with autism. In all likelihood, that person was a child.

Those kids are going to be adults. Every year 50,000 kids age out of the system of care set up for kids with autism. And some of those, like Moe, are going to need around the clock care. Think about that. For the rest of Moe's life he is going to need someone to take care of him 24 hours a day, 7 days a week.

According to the Autism Society San Francisco's website:
California's adult autism population is exploding, expected to double in the next five years and triple over the next ten, according to Department of Developmental Services data. California now counts 80,000 autism cases in the Developmental Services system, up from about 3,000 in the early 1980s. All 80,000 will be adults within 15 years, and in need of lifespan support from a system designed to serve just a few thousand.
I recently attended a conference on housing and support for autistic adults. I'm going to write about that in more detail, but for now, I want to leave you with a trailer for an upcoming documentary that was shown at the conference. It paints a grim picture of autism - one that some, including many autistic adults, don't like shown. But it is also one of the most honest portrayals I've seen of the challenges some, though certainly not all, parents face.

The movie is called Aging Out. Check out their website and facebook page. And I've included the trailer below.

November 3, 2015

How does she do it? No really. How?

Yesterday I wrote about why I work. Today I want to tell you how I work, or rather, how I make it work. We've got a lot going on, including a kid with complex educational and behavioral needs. Going to work came with a lot of challenges, but as a friend told me "Get the job. The rest is just logistics."

But people make entire careers out of logistics. Here's what we do to make it work.

We have a full time nanny for Moe. And not just any nanny. She's well trained and experienced with kids with autism. She is essentially Moe's head teacher. Having her also means that Jeff and I don't have to take time off for long school breaks, and she helps by doing the kids' laundry and keeping the mess relatively under control.

We have a well established home program. Moe's program was running smoothly before I went to work. Although Moe's therapists change periodically, the agency that runs his program and our supervisor haven't changed in several years. Jeff or I also make sure to attend the monthly team meeting.

After school care for Jelly. I take Jelly to school in the mornings before heading up to work. It makes my commute longer, but I like to be able to see her teachers for a few minutes every day. She stays in the after school program until Jeff picks her up between 5-6 pm. Her school is connected to a community center, which is fantastic because they'll walk her over for dance and other after school classes. Without that, she wouldn't be able to do any extra-curricular activities.

A relatively flexible work environment. I work at a large tech company, and I am really busy. But with technology comes some level of flexibility. I can work from home if I need to, and video conference into meetings. I can occasionally come in late or leave a little early. I can't do it all the time but when I need that flexibility, it's there.

Online grocery shopping. It may sound ridiculous, but knowing that I can have groceries (and everything else for that matter) delivered was one of the reasons I felt like I could actually have a full time job. Yes, I can shop on the weekends, but our weekends are unpredictable and I'd rather spend my limited time and energy on my family.

A supportive husband. It makes a big difference having a partner who treats your work as equally important as his or her own, and who understands that being able to work is an integral part of your identity. Jeff shares school pick up and drop off duty, and we help each other out when the other has to be at work early or late.

Letting some things go. This is the most important piece. There isn't time for everything. Some days, we have to get takeout for dinner. Some weeks, the laundry piles up. I don't exercise as much as I should because I race home after work. I don't get to volunteer in Jelly's classroom as much as I'd like to, and when I do make time for that, I'm always worried about what's going on back at work. There is no such thing as the perfect work-life balance. There will always be trade-offs.

November 2, 2015

Why I Work

I never thought I would be a stay at home mom. I was home with Moe for a couple years, then had Jelly right at the same time he was being diagnosed. With two small kids, and Moe's therapies as well as our eventual decision to homeschool, it made sense for me to be home full time.

After six years, I finally returned to work. It wasn't easy but it was probably the best decision I've made since the kids were born. Here are a few reasons I decided to return to work.

1. I was burned out

Moe's autism affects everything we do every day. For his safety, he requires full and constant attention. It's intense and stressful and once we started homeschooling, I felt thoroughly trapped at home. Though I have some really wonderful memories of our first few years together, I needed a break.

2. I was bored

When Moe was working with his therapists, and Jelly was in preschool, I didn't have a lot to do. It's one of the reasons I started blogging. I learned some sign language. And read a lot of autism blogs and books. But I missed the challenges of my career. I know many parents really love being at home with their kids, but I admit that maybe I'm not cut out for that much mommy-ing. Autism changed the type of stay at home parenting I could do, but that isn't the whole picture. I wanted a bit of my old life back.

3. I was scared

I still am. I'm scared of what will happen to Moe in the future. I'm scared of his ability to hurt others and himself. I'm scared of what Moe's level of need is doing to Jelly. When it comes to the battle between fight and flight, I admit that I'm more of a flyer. I needed an escape.

4. I wanted to set an example

I'm not sure how Moe felt about my going to work, but Jelly didn't love it. She still complains sometimes. But it is important to me that Jelly knows that both moms and dads can work. I grew up in a traditional household, where my dad worked and my mom stayed at home. This was great for me and my brother. But I have a fancy education and I want to use it. I want Jelly to see that women can have important and fulfilling jobs just like men. And that Jeff and I share the parenting jobs that often fall to moms (especially stay at home moms), like driving on class field trips or taking them to the pediatrician.

5. The money isn't bad either

I wanted to go back to work and was willing to do it as long as I could make it break even after paying for childcare. Fortunately, I'm able to bring in a bit more than that, which helps. And even though I make significantly less than my husband, I work for the company with amazing benefits. So I know I'm contributing to the household, which is important because raising a special needs child (who will also be a special needs adult) isn't cheap. Neither are those boots I just bought.

6. I like it

This may be the most important point. I like working. I like having interesting conversations with smart people. I like solving problems that don't involve my kids. Work is personally fulfilling and that is, in itself, enough of a reason to do it.

Working is hard. Sometimes I miss out on things. I like to think that working gives me the energy to make me a better parent, but I'm not sure that's true. I just know that I'm happier when I'm working than when I'm not.

November 1, 2015

NaBloPoMo Day 1: Halloween recap

It's November 1, day 1 of NaNoWriMo (National Novel Writing Month) and this year I'm not participating. It's too much for me to do right now, and I'm okay with that. I don't need to write 2,000 words a day. I don't need to write that novel right now.

But I do need to write. And so I'm going to attempt NaBloPoMo: National Blog Posting Month. One month in which I attempt to write a new blog post every day. Can I swing it? We'll see. I do have a lot to write about, though some of it will have to remain quiet for a while. Since yesterday was Halloween I'll start there.

Moe doesn't "get" Halloween, but he doesn't seem to hate it either, so every year we dress him up in a relatively comfortable costume and attempt to participate as much as he wants.

Some years are better than others. Moe's first Halloween, at 6 months old and dressed as a chili pepper (an homage to my brother, a die-hard Red Hot Chili Peppers fan), was less than amazing. We went to a large mom's group event, which was noisy and hot and, as I've said about other such things, the opposite of fun.

Following years were okay. At one, Moe enjoyed his monkey costume, and at four seemed to tolerate the m&ms costume for the school parade. At 5, the cookie monster costume worked well. And for the last 3 years, he's gotten skeleton pajamas, which work well for a brief walk around the neighborhood.

Our neighborhood is pretty active on Halloween. Since Jelly was born, we've gone out as a family. We walk to see a neighbor's haunted castle, complete with animatronic dragon out front. Then we take Moe and Jelly to trick or treat at a couple of houses, walk back home, and turn off the porch light so the dog won't spend the night barking and the kids can get some sleep.

But last year, Jeff and Moe came back after a few houses and handed out candy. Moe seemed to like that so we thought we'd try it again this year. Unfortunately, Moe had other plans. We got the kids ready but by the time we got out the door, Moe was already really over stimulated. He wouldn't walk with us and started to scratch Jeff. So they came back and Jelly and I walked the 'hood by ourselves (and a ton of other families out and about).

Jelly and I had a good time collecting candy and even venturing into one of now two haunted houses in our neighborhood. Meanwhile back at home, Moe and the dog were too wound up for trick or treaters. Jeff had to deal with a perfect storm of not one but two leaky pull-ups, spoiling the last ofthe clean pajamas. So Jelly and I came back to a really overtired Moe, with at least another hour to go until the laundry was done.

I try not to have too many expectations for holidays like Halloween. Moe doesn't understand it, so I know he doesn't feel like he's missing anything. It is really easy to get down about what we can't do as a family, or how tough even a night at home can be. I try to focus on what went right. Jeff took good care of Moe. Jelly had a good time. It was a beautiful night and Jelly's Joy costume didn't even require a sweater. The laundry did get done and the kids eventually fell asleep.

And well all got that extra hour of sleep this morning. Or not. Whatever.

September 29, 2015

Whitewashing vs Neurodiversity? It doesn't have to be a choice.

With Steven Silberman's book NeuroTribes, and Amy Lutz's  recent article, "Please Stop Whitewashing Autism," the autism self-advocate vs. parent community fights seem to be picking up steam again. I don't plan to participate this time around.

But I have been wondering about something new. Science has shown that there are not one, but many genes likely to cause autism (Dozens of Genes Associated with Autism in New Research). It seems as if the science is beginning to suggest that there is no single autism, or even a single autism spectrum. There are many sub-types, and as we learn more about the brain and the genetics, we may find that many of the people we classify as "autistic" may actually have a different disorder. In other words, Steve Silberman and Moe may have nothing in common at all.

And when that happens, what will happen to all those self-advocates who claimed they were there for my son too? What happens when it turns out that they don't actually know any more than anyone else about what's going on in my child's brain?

For the record, I'm not against the self-advocate community. Their message is powerful and vital: "nothing about us without us." Stop infantilizing the disabled. People with disabilities must have a say in their own care. Independence. Dignity.

We must absolutely all rally around these tenets.

But we must also recognize that it's not always that easy. Moe can't tell me he has a headache, let alone advocate for his housing rights. At least not yet. And as long as medication is the only way we've found to keep him from hurting himself and others, we will make the choice to use that medication for him. Yes, we listen to his communication in every form, but his message isn't always clear.

Do I think autism is being whitewashed? I don't know. Maybe sometimes. I certainly don't believe that autism is a gift for Moe, nor that his brain just works a little differently. He is severely disabled. But his experience is no more or less valid than anyone else's.

Let's all share our stories. Let's learn from each other, help each other out when we can, and when we can't, get out of the way.

September 22, 2015

To be Inscribed

I've been having a hard time with religion lately. I should say that I've never been especially religious. Raised Jewish, I've never kept kosher, or attended temple much beyond the occasional bar mitzvah. But I have always felt a connection to being Jewish and to the community. Some of my happiest memories are around the Passover seder table or breaking the Yom Kippur fast.

The Book of Life

Last week was Rosh Hashanah and tonight is the beginning of Yom Kippur. These two "high holy" days are bookends to the week where God opens the book of life and inscribes in it. These are days of reflection and this powerful prayer, the Unetaneh Tokef, is at the heart of it:
On Rosh Hashanah it is written, and on Yom Kippur it is sealed.
How many will pass and how many will be created?
Who will live and who will die?
Who in their time, and who not their time?
Who by fire and who by water?
Who by sword and who by beast?
Who by hunger and who by thirst?
Who by earthquake and who by drowning?
Who by strangling and who by stoning?
Who will rest and who will wander?
Who will be safe and who will be torn?
Who will be calm and who will be tormented?
Who will become poor and who will get rich?
Who will be made humble and who will be raised up?
But teshuvah and tefillah and tzedakah (return and prayer and righteous acts)
deflect the evil of the decree 
"Who by fire and who by water?" As I write about this, the third most destructive fire in CA history is burning. Did God write that an entire town should be destroyed?

"Who in their time, and who not in their time?" And did God write that my brother who was, by the way, probably the most righteous of any of us, should die of a brain tumor at age 25?

"Who will be calm and who will be tormented?" And did God write that my son should struggle so much? That he should spend his childhood injuring himself?

This is not a God I want to believe in.

If you ever want to know why Jewish guilt exists, look at that last line. If you die, or are poor, or get hit by an earthquake, it's probably because you didn't pray hard enough or weren't a good enough person.

And here is the messed up part — despite my anger, despite every logical inkling, sometimes I still think that maybe this year I should try a little harder to believe. That maybe if I pray a little harder, if I'm better, then maybe Moe will be inscribed in the place where he can rest, and be safe, and be calm.

September 8, 2015

An Open Book

My hands are looking pretty beat up these days, covered in scratches and scabs. My wrists too. Moe is having a rough time.

When things are really bad, he bangs his head on the floor, the table, or any hard surface he can find. And Jeff and I (or our incredible nanny who pretty much deserves hazard pay by now) spend a lot of time trying to keep him safe. And we get a little scratched up in the process.

I suspect he started off not feeling well, maybe with a sore throat. Then he started banging his head, leading to headaches, leading to more frustration and head banging. Moe doesn't like it when we don't let him hurt himself, so he scratches.

And now my hands look like this. It's minor in the scheme of things. Whatever Moe is feeling to make him want to hurt himself and lash out at us, is worse. I know that.

But it poses a bit of a dilemma for me. I work full time, and I don't hide the fact that my son is autistic. For one thing, I probably wouldn't have my current job if I hadn't started blogging about Moe. I had taken six years off before going back to work so when I started interviewing many of my writing samples were from this blog. So anyone who interviewed me knew at least some of this story.

Most of my co-workers know as well. It's easier to have it be out there. I was nervous about that at first. It's hard enough being a working mom, let alone one with a special needs child. But it makes some things easier to explain, and you never know when you'll find a connection with someone with a similar story.

Besides, as a blogger (read: oversharer), it would be more uncomfortable for me to hide this side of my life. So for the most part, I'm open about Moe. I work with kind and intelligent people who don't try to sell me on the latest fad cures, so I like it when they ask questions. They actually listen. So, when a co-worker notices the bandaids on my wrist and jokingly asks "tough weekend?" I don't make up an excuse about a cat or scratches from the garden. Yes, it was a tough weekend.

But bringing the really hard stuff to such a visible place, not just on this blog but literally on my hands, can be difficult. Work is my escape from life with autism. I don't want those emotions at work and these scratches are a reminder of the hardest part of my life, watching Moe struggle. Worrying about his future. Getting beat up by my own kid. And I don't want that part, the worst part, to be how Moe is represented to the world.

So let me show you the sweet side of Moe too. The one where he snuggles up to me and we hold hands, if only for a minute. And his eyes, such a bright blue when he smiles. A smile that is all too rare these days but that we don't stop fighting for every single day.

August 18, 2015

The hardest time of year

My Facebook feed is filled with photos of children heading back to school, their eyes brightly filled with nervous anticipation. Next week, I'll post some back to school photos too. Jelly will be starting first grade. I can hardly believe it.

But Moe, once again, will not be starting school. Not traditional school anyway, the kind with backpacks and lunch boxes and newly decorated classrooms. Moe will, for now, continue to be homeschooled. And even if it is the right thing for him, it hurts.

While most parents of special needs kids learn to ignore milestones, to accept their children exactly as they are and celebrate progress whenever and however it comes, there are still those things that are bigger reminders. As if we could forget.

It might be the holidays, surrounded by family or friends whose kids are striding forward just as everyone expected them to. Maybe it's birthdays that unglue you, forced to face a new number, another year of nowhere near where you thought they'd be. Maybe it's summer break, watching kids go off to camp and family holidays, knowing you're unlikely to ever take a real family vacation again.

It's all hard, but for me, back to school time is especially rough. Facebook is filled all at once with photos of every kid I met in the early days of motherhood, through babyhood and first steps and mommy and me classes. How big they are! How far they've come! Third grade already. Happy to get the teacher they wanted. Happy to see friends. Happy.

And we, once again, are faced with choices, risk in all of them. Send him back to a public school that isn't able to serve him well? Fight for placement, knowing that it would be better than what the public school would offer but unsure if it would be better than what we're doing at home? We're doing the work to figure that out, and we will. But it isn't the problem I want to be solving.

I want to be helping Moe with friends and homework and auditioning for the school play. I feel bad that I can't give him those things. I feel bad that I can't take away his frustration and anger and anxiety. And mostly that I brought him into a world that is not set up for him, and for not knowing how to help him get set up for the world as it is.

June 28, 2015

Things Change. Things Stay the Same.

It's been hard for me to write lately. I'm tired, working full time. And since I work as a writer, even though my daily writing is very different (should the button say "cancel" or "continue?"), that piece of my brain, the piece that makes me need to move my fingers around a keyboard, is tired at the end of the day. And then there are kids to put to bed and dinner to make and chores to finish. And also Orange is the New Black.

But those are all excuses. You know it and I know it. The truth is I haven't wanted to write. It's been too hard. Too hard to find the energy to hash it all out. It's so much easier to block it out for a few minutes with a glass of wine or the latest episode. Or both.

Moe turned 8 in May. And while I've long given up on the comparisons and the what would he be doings, each birthday is one step closer to the rest of his life and all there is to worry about. The Future. About no good options for housing and care and what are we going to do when we aren't here anymore. I woke up in tears one day wondering who will make Moe his favorite foods when I'm gone. It's a silly thing. Except it's not.

And then, because it was June and the end of the school year, we once again began the IEP dance with our school district. They do the assessments. We observe sessions. We craft goals. We talk to some very well meaning people and some not so well meaning and they offer us the same thing they offer us every year. A bundle of services in a classroom that is totally inappropriate with a staff that is woefully unable to handle a kid like Moe.

So we continue to do what we've been doing. And hoping it's the right thing. And not sure how to proceed if it's not.

And along with all of that, the aggression and self-injury has returned. Moe hit his head so hard on the dining room table that his entire forehead swelled up. And then, as the swelling drained, his eyes turned black and blue. With newly missing top teeth (even the most special kids can't escape some of the normalcies of childhood), he looked like a prizefighter. A cute, eight year old boxer in striped pajamas.

We went through the gamut of reasons. Pain? Teeth bothering him? Sick? We took him to the dentist just in case. He was messing with his ears a little. Ear infection? Just unhappy? Needing sensory input? Too much input? And how we want to help him, and how we want to stop being scratched, grabbed, attacked by our boy. And the whining and needing but never knowing what. Food? TV? iPad? Sorry kid, you broke it. Bit and cracked the screen - right through the case.

His doctor increased his medication. We waited a few days to get some baseline data. And then we started. Just a small increase. And things got better. Just like that. It's only been a few days and I'm trying to enjoy how sweet he's been. Affectionate and wanting to sit with me. And he's better at communicating. I'm trying to remember not to flinch when he turns quickly toward me. Trying to enjoy the silence and have a little more patience with Jelly. Trying to push out the fears of what if this dose isn't enough? We can't just increase it forever. Right now it's enough. Breathe.

There were good things this summer too. Jelly turned 6 in April and then finished kindergarten. I took her back east for a week to meet all the cousins. She got to run and play and not have every day determined by Moe's mood or needs. It was important for me too. I have good cousins and aunts and uncles I don't get to see very often.

This week starts the next chapter for us. After a few months off to take care of Moe, Jeff goes back to work tomorrow. That was a big deal I haven't talked about here. Maybe another time. Our new nanny has her first solo week with Moe. She survived a rough first week, but I hope next week will be better. Jelly has one more week of camp before she's off for the summer. And I'll keep on working, and writing when I can.

January 20, 2015

If I Fall, If I Die


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

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. 

January 3, 2015

Pizza and Parenting, a Metaphor!

Tonight I made pizza for dinner. I've done this many, many times before. I'm pretty good at it. I made the pizza dough, preheated the oven, rolled out the dough, put on the toppings and baked. It turned out terribly.

I had problem on top of problem today. I decided to make two smaller pizzas with different toppings instead of my usual one large one. My pizza stone was out in the garage, and the pizzas wouldn't work on one air bake pan, so I just planned to make them on a baking sheet. I put the sheet in the oven to preheat.

At this point, I thought I
still might salvage something
I rolled out the dough, topped with everything but the cheese, and got ready to put in the oven. But I had a problem. How was I going to get the rolled out, already topped dough onto the heating baking sheet? I don't have a pizza peel. (How this is even possible?) The dough was thin and when I attempted to lift it, it just fell apart.

Meanwhile, Moe was whining and crying and fussing about being hungry. Frazzled and rushed, I decided I'd just make the pizzas separately, got out air bake pans, and managed to get the first very messy dough transferred. I moved the second pizza to its pan a little more easily, but both crusts were stretched very thin.

I baked the first crust for a bit, then topped with cheese. Otherwise, the cheese burns before the crust is baked through. As I put the cheese on the pizza I realized I had somehow bought fat free mozzarella. If you've ever used fat free cheese, you'll know that it is nothing more than flavorless rubber strings that do not melt well and belong on no pizza ever. But it was all I had.

Second pizza was equally screwed up
With the first pizza out of the oven, I still had hope. I sliced it, and tried to lift a piece. It stuck to the pan. Completely. In my haste, I had forgotten to oil the pan.

What can I say? It wasn't my day. It happens to the best of us. I know I can make really great pizza but today, as Jeff said, "my head wasn't in it" and I mucked it up.

Jelly has been into metaphors lately, and wow, what a metaphor this provided. How many times have we all made mistakes either because our heads weren't in it, or because factors just seemed to be conspiring against us?

As a mother, especially of a child with limited communication skills, I rely on formulas—recipes of communication that usually give me a positive outcome. But sometimes I don't have the right ingredients, or I try something new, or I don't plan ahead correctly and I screw it up.

But this kind of mistake is harder to let go. The stakes are so much higher and I want to get my interactions with Moe and Jelly right every time. But I don't. Sometimes I yell, or choose to give iPad time instead of engaging in a game, or cave when Jelly only wants crackers for dinner. I lose my patience with Moe. A lot.

I will never get it right every time. And every time I read a blog post by a parent who has learned to no longer tell her kids to hurry up, who is always patient and positive, who never allows screen time and whose children make their own spinach avocado smoothies for breakfast every morning, I know I am going to screw up. Because parenting is hard. And parenting a tough kid is even harder. Much harder than making pizza.

All I can do is remind myself of past successes and know that I'll probably get it right the next time. Or the time after that.

Better luck next time

Here are a couple of posts about times I've successfully made pizza!
Using Pioneer Woman's pizza dough recipe
Quick and Easy Pizza


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