Designing a Home for Autism

I’ve spent my career working for technology companies in Silicon Valley. But I almost gave it up to become an Interior Designer. In the end, I decided to keep my tech job, but planned to use my skills to make my own home beautiful.

Then we had kids. And one kid in particular, my eight year old, Moe, has influenced my new design style. I use that word loosely. Our home is designed purely to make things easier and safer for Moe. Let’s call it “nouveau practical” or “Moe­nimalist.” (It’s okay to groan.)

Moe’s Room

When we’re out with Moe, we have to hold his hand nearly constantly. So home needs to be the place he can have some freedom. It’s hard to make an entire house safe for Moe, a strong and active kid, with Spiderman­like climbing skills, but little sense of safety or rules. I want Moe’s room to be his sanctuary.

Moe’s room has only a bed, some soft pads on the floor and a big crash pillow. The dresser that my husband painstakingly stained when I was pregnant had to go because Moe was climbing on ­ and jumping off ­ it. We put a tall narrow dresser in the closet instead.

The room, though bare, doesn’t scream “autism!” I even attempted a bit of a retro­-surfer theme, complete with surfboard decal and comforter. But look closely and you’ll see that the surfboard blanket is weighted. The closet that holds Moe’s clothes also contains a diaper genie because he’s still in pull­ups. There’s a drawer dedicated to chewies. And a lock on the closet door. There’s a carabiner hanging from the ceiling so we can hang a swing, a comfortable spot for Moe to use his iPad or look through magazines.

Our most ingenious invention was created to keep Moe from jumping off his window ledge. We were afraid he was going to hurt himself, so we installed a sheet of clear acrylic across the window. This also allowed us to hang blinds, in between the window and the acrylic. Prior to this, he tore his wood blinds down, and we had to put a nearly opaque film on the window so it would be dark in the room at night.

I think Moe really likes his room. When his “motor is running high” he can go there to calm down. He has figured out an ingenious way to spin the swing really fast when he wants stimulation. The walls are dirty from Moe’s feet as he pushes the swing. There are bits of the magazines he likes to tear up all over the floor.

Everywhere else

The rest of the house varies by room. Every door, including closets, is childproofed. A couple of doors have keypad locks so my daughter can get into her room and the bathroom without needing help.

We’ve got a trampoline and locked toy cabinet in the living room and a locked toy cabinet. (The latter more for mess control than safety.) For a while, as part of Moe’s homeschool program, we had little pieces of blue painters tape with velcro on them in front of every room in the house. There’s a baby gate across the kitchen. It doesn’t keep Moe out but it slows him down a little. Some rooms, like our office and master bedroom are full. My daughter has a lot of toys and art supplies that I’d much rather keep in a common play area. Other rooms are nearly empty. There are no curtains in the living room and very few paintings on the wall. I can’t have shelves to display knick­knacks or family photos. Our floors are beat up and need to be refinished. I agonized over which white to choose for our walls. Instead of “Winter White,” I should have found the best paint match for the marks Moe leaves as he slides his fingers along the walls.

I could go on. There are so many ways we’ve altered the design of our house and the design of our lives, to meet Moe’s needs. I’m not always happy about it. My house can feel closed and dark, when I really want open and light. It isn’t beautiful. But Moe is safe and comfortable here. And there is beauty in that.

This post was originally written for Autism Speaks.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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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

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.

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.