May 28, 2013

The S-Word

Friday night was one of the worst nights of my life. It wasn't the worst; I was with my brother the night he died. No one was injured (much). No marriages were ended or houses destroyed. But it was a night I hoped would never repeat itself, but has, to some degree, every night since.

I wrote a post about what happened, a play by play of the seven hours that Moe spent screaming. I decided that maybe such detail was better left for a private journal entry. Toward the end of the piece, however, I wrote this:
And this is where I will say what I try to avoid saying. Sometimes, autism sucks. I know that is hard to hear, and I am not trying to offend anyone. But it is our truth right now, and I dare say Moe might agree with me. For some, autism may bring great gifts alongside the challenges. But not here, not today.
I've spent the last few days trying to decide if I would post that statement. On the one hand, I know that many are offended when someone says "autism sucks." On the other hand, it was exactly how I felt.

Autism isn't just a disability. It is the very lens through which autistic people view the world. It is, to put it most simply, their brain. There is no Moe with autism and Moe without autism, so if I say "autism sucks," I am really saying "Moe's brain sucks," ergo Moe sucks. And how could I, as Moe's mom, the person who loves and cherishes him more than any other person in the world, think that, let alone say it out loud?

The flip side of that, however, is that autism is, for Moe, quite debilitating. After all, what is autism if not a disorder? We parents are often criticized for focusing only on the challenges of autism, and not the gifts. But without the disability, what is autism? In other words, if someone had all the "gifts" of autism (say, for example, Temple Grandin's astounding visual thinking skills), but none of the deficits, would she still be autistic? Can you ever separate the person and the disorder? Different people will have different answers to that question.

Moe's autism makes him unable to sleep. It makes him aggressive. It makes him unable to speak or clearly express his wishes, causing immense frustration. I can only guess that if Moe were able to make all of those challenges go away, he would. If behavior is communication, what does his scratching and biting say, if not "this sucks?"

But I cannot say what Moe thinks. I can only say what I think. And I think autism is really, really hard on our family. On days like today, when I've slept only three hours, I love Moe but I do not love autism. The idea that I cannot hold those two opposing views in my mind at the same time is someone else's construct. Not only can I make that distinction, but I do it every single day. I have to.

Scratches from earlier today
I have to believe that it is not him, but autism, that makes him grab fistfuls of my hair at one in the morning. I have to believe that it is not him, but autism, that makes him kick me in the chest when I change his pull-up. I have to believe that it is not him, but autism that makes him bang his head on the hard floor until we're worried he will really hurt himself. 

It is autism that makes him unable to sleep or speak, or use the bathroom, or play with his sister, or go to school. It is autism that makes it so that he can't say "Mommy, I love you."

I have to believe that he would if he could.

Because that is how I keep doing what I'm doing. That is how I get up every morning no matter how little sleep I've gotten and give Moe a hug and a kiss and get to work helping him be everything he can be. That is how I keep moving forward, fighting every single day for more for him, for more than just "appropriate." That is how I live in a house you wouldn't believe, with locks on every door, unable to even have curtains because Moe has pulled them down. To live in constant fear for his safety, now and forever. 

If I am going to be able to love Moe and fight for him, I need to be able to, once in a while, shout to the universe that "autism sucks!" and not be filled with guilt that it must mean I don't love my child. Because I do. Some days, that love is the only thing that keeps me going.

My beautiful boy

I am moderating comments, so yours will appear after approval. As always, respectful disagreement is welcome.

May 21, 2013

2013 Update

Oh, twenty thirteen, it's been quite a year so far. Time flies when you're busy, even if you're not always having fun.

I'm coming down from a few busy months, starting with my birthday weekend in San Francisco, followed by my trip to San Diego with Jelly, then her birthday, and peaking on Mother's Day with Listen to Your Mother. It all came to an exciting conclusion last Friday when I had all four of my wisdom teeth pulled.

At the beginning of the year, it all seemed so far away, and now here we are. One more month and the year will be half over.

This time last year, we were right in the middle of some nasty IEP meetings. And although that was a very tense time, and meant a significant change for both of us, I will never regret pulling Moe from school.

That decision doesn't exempt us from IEP season, however. Because this year would be Moe's third since he started school, he was due for his triennial assessment. For those of you who don't know, while a new Individual Education Plan (IEP) is written every year, a full assessment is generally done every three years. Moe's first with the district was when he left early intervention, funded by the regional center, and entered our district's autism preschool special day class.

The assessment started last week, and involves several standardized tests, questionnaires for me, an OT assessment and some observations. We know the people doing the assessments. They are kind and smart, though seeing them again has brought up some pretty strong feelings.

At the end of the assessment, we will have an IEP meeting. The district will set goals and make some offer of services. We still feel pretty strongly that a classroom environment is not appropriate for Moe right now, but we do want him to return to school eventually, so we continue to go through the process.

Moe turns six next week. We won't have a party, but we will have cake. I will try to make it a special day for him. I am trying not to think about what might have been. How, in another version of our life, he might be finishing up kindergarten. That we would be planning summer vacation and choosing a camp.

Instead, I will continue putting one foot in front of the other, and start thinking about what the second half of the year may bring.

May 19, 2013


Every few days I walk the perimeter of our backyard. It is a nice yard, not too big. It is a simple rectangle with a patio and a lawn. I can see the whole yard from the patio, not typically the kind of property that would need someone to walk its perimeter.

But I do. I walk the perimeter checking the fence. I make sure every board is in place, that no new gaps have appeared since the last time I checked, just a few days prior.

Because one time, one of those boards was loose. Moe walked by, and it must have tipped over. He walked right through it into the neighbor's yard.

He wasn't scared. He wasn't escaping anything. He was just curious, saw an opening and walked through.

I didn't see him go through the fence. I was there in the yard with him. He was swinging, and I looked away. Maybe there was a bird. Maybe I stooped to pick a weed out of a crack in the patio or swat away a bee. When I looked back up the swing was going, empty, like a scene from a stranger danger PSA.

"Moe?" I called, peering into the playhouse, the one spot he can hide in our yard. He wasn't there.

I don't know what made me check the fence. But I saw the hole. I rushed through, thankful that I was able to fit. Moe was right there. I grabbed him (and our dog who had of course followed us through), my heart pounding, and ran into the house. Locking the door safely behind me.

I was lucky. Moe was there. He was right there.

Moe was lost once other time, at school. They messed up, two aides each thinking the other had him. He popped into an open classroom. He could have been anywhere, including the creek they walked to every Friday afternoon.

Again, were were lucky.

Moe has been lost twice. Twice found. But I have nightmares about losing him. Shouting his name as he walks away. Begging people to grab him while no one listens.

We recently trimmed some branches from our grapefruit tree. Moe has learned to climb the tree, and as the branches grew closer to the neighbor's fence, I could see him peering over the top. It wouldn't be long before he decided to leap right over.

We are diligent. We are paranoid. And yet, we are human. Just the other day, Moe and I were in the yard. The dog started scratching at the neighbor's dog through the fence. I rushed over to stop her, knowing that the scratching could compromise the fence in that spot. When I looked up, I didn't see Moe. He was fine, just in the opposite corner of the yard.

This week, we lost several beautiful children (in unrelated incidences) who wandered from safe places and drowned. My heart breaks for them, for their families and caregivers. I will not dwell on the people who have chosen judgement and blame. I do not know what happened, but I do know how it could happen. How it has happened. To me. To Moe. Unless you've lived it, you do not know.

We are diligent. But we have also been very lucky.


May 16, 2013

Finding Inspiration

 On Sunday, Mother's Day, I had the most amazing experience. I participated as a cast member in the San Francisco Listen to Your Mother show. Fourteen of us took the stage, sharing our stories to give "mother's day a microphone."

I live in San Jose, about an hour's drive south of San Francisco, and was full of nervous energy as I drove north on the 101 freeway. I psyched myself up on the drive, talking to myself out loud. I practiced my piece, especially the last line. I didn't want to get choked up on stage. I looked for messages of inspiration in the billboards. One was for an upcoming movie and stated "It's going to be epic." "It is!" I said aloud. Another, for a local hospital, pictured an enormous baby fist. I threw my fist in the air and gave that baby a fist bump as I drove by. "Bam!" I said. "Let's rock this thing."

The last time I was similarly inspired on the freeway was in the mid 1990's. I was a couple years out of college, driving from Berkeley to Palo Alto for a job interview. I drove, south this time, through the tech corridor. It was an exciting time in Silicon Valley, and I felt that entrepreneurial spirit building within me as I passed billboard after billboard for tech companies quite literally creating the future. I got the job that day, doing tech support for a startup called WebTV, despite my complete lack of technology experience. It was a defining time in my life.

Sometimes that drive down 101 seems a lifetime ago. I've been a stay at home parent for six years. We are coming up on the four year anniversary of my son's autism diagnosis. I recently had a round number birthday. It is easy to get bogged down in this life of special needs parenting, to focus on getting through the day and forget to be inspired. To feel like the best is behind us.

Listen to this mother when I tell you it is not. There is something about standing on a stage in front of 300 people and baring your soul. I owe so much to the producers of the San Francisco show, who put their faith in me. They allowed me the opportunity to not just share my story, but also to prove to myself that I have so much more to do. And to the other women in the cast, who shared so much of themselves and reminded me that we can learn from and support each other, no matter how diverse our experiences.

And most importantly, that a good cry, followed by a really great laugh, can get you through just about anything.

Photos courtesy of ZemyaPhotographyVideo from Listen To Your Mother will be available this summer. I will post my piece here in the near future.

May 8, 2013

Rain or Shine

It's been a hard few weeks. Really hard. Moe hasn't been sleeping. He's dysregulated and aggressive. He bit 3 people and has scratched the hell out of my arms. On top of that, we got the final report back from his latest psych assessment. I won't bore you with the details but it is always hard to see the numbers that compare your six year old to a toddler. These numbers aren't supposed to bother me any more. But they do. Of course they do.

There were good things too. Jelly turned four, and we had her birthday party. I decorated her room with fairy decals while she was at school. I made cupcakes for the party. ("How to Make Fairy Cupcakes, Part 2" will be coming soon. See here for Part 1.) She had a great time. But Moe had a hard time at the party, and Jeff spent much of the time managing him. It put a damper on things. I try not to be resentful.

We had our last rehearsal for Listen to Your Mother and it was nothing short of wonderful. The show is going to be great. I'm getting more blog traffic and opportunities since being selected as one of Babble's Top 30 autism blogs of 2013. And yesterday, I had a job interview. I'm excited about it. I don't know how it will go--it is always so hard to interview over the phone--but it made me realize I do have choices. There is more for me yet.

This autism gig is hard. But as I think about many of the good things in my life--friends, this blog, the opportunity to read something that I wrote in front of a live audience--I am realizing that many of these are not despite autism but because of it. I focus a lot on the opportunities that Moe, or more accurately, Moe's disability, have taken away from me and my family. But there are good things too.

Jeff and I had the opportunity to see David Sedaris live on Monday. Moe was melting down as we were leaving and I was stressed about leaving him, even in the very loving and capable hands of my BFF. I wasn't worried about him as much as the idea of putting her through one of his meltdowns. He was overtired, so we gave him his melatonin early and went. We needed to go out together, to do something normal. We needed some fun, to prove to ourselves that even when things suck, we can still go out and laugh. It felt good.

When Moe is on a down cycle, there isn't much we can do but ride out the storm. It's an appropriate analogy, because much like the weather, these cycles will always come and go. Sometimes I don't recognize myself anymore, I am so steeped in this life of special needs. But I am slowing figuring out how to carry on, to reclaim myself, rain or shine.

May 2, 2013

How to Make Fairy Cupcakes, Part 1

I have a few talents. I can write. I am a decent cook and baker. I have a pretty good eye for interior design. I am not, however, crafty.

Every so often, however, I decide to try to create something. Usually I am able to overcome this urge by buying something on Etsy or distracting myself by taking care of one or even both of my children. But sometimes, against my better judgement, I make an effort. Today was one of those days.

Maybe it is because I've been feeling guilty having to miss the birthday celebration at Jelly's school. Or maybe because this particular project seemed so damn easy I couldn't possibly screw it up. Regardless of whatever misguided reason I had, I went for it.

So now I give you Part 1 of how to make fairy cupcakes:

Cupcake Toppers

Do make sure you know your daughter's preferences: chocolate cupcakes, green frosting, Tinkerbell toppers.

Do create Pinterest board for Tinkerbell cupcake ideas. 

Do not take daughter to party store where she can change her mind seventeen times. Do buy perfect stickers for cupcake toppers. Do talk daughter down to one package of additional fairy puffy stickers and Tinkerbell napkins that you weren't going to buy because the bounce house place provides everything but if it will make her happy for God's sake I just want to get out of here.

Do plan out schedule: Tuesday: start toppers. Wednesday: finish toppers. Thursday: make one batch of cupcakes. Friday: make second batch of cupcakes. Friday night: have friend come over for drinks and frost cupcakes.

Do feel good about yourself when you manage to put on stickers and cut squares out of paper. You are a crafting rock star!

Do not forget to take pictures along the way, so take a hastily assembled one after the fact. 

Do not forget schedule the next day and decide to watch TV instead.

Do use son's time with ABA therapist to finish toppers, putting self back on schedule.

Do assemble craft supplies: previously created stickers on paper, toothpicks, tape and glue.

Do use tape to attach toothpick to back of card, making sure fairies head will be pointed UP. Be proud of self for thinking of this in advance.

Do immediately text friend to get opinion on whether each topper should have the same fairy on both sides of the topper or two different fairies. Obsess over whether it will be better for four year olds to have two fairy options per cupcake or if they should just stick to one, limiting the number of opportunities for each kid to have any given fairy. Friend says one fairy per cupcake. Go with that.

Do quickly count and make sure you have an even number of fairies. 

Do use Elmer's white glue to attach the two matching fairies back to back, again ensuring heads remain facing up. Do remember how it is impossible to do anything with Elmer's white glue without getting it everywhere.

Do not get sidetracked covering fingers in glue and then peeling it off.

Do line up completed toppers side by side, so they won't stick to each other. Do take photo. Do not explain that they are on top of a plastic bin containing the Little People farm because that is the only flat surface in the house that does not have a pile of junk on it. 

Do edit photo to be facing correct direction.

Do not run out of glue.

Do not use a glue stick, as you will find that it is not sticky enough.

Do not find another unused bottle of glue, attempt to use, and find out that the glue has somehow separated like an old bottle of ketchup, leaking a clear watery substance before white gluey part comes out. This glue will also not stick.

Do take to the internet to complain about glue battles. Friend will suggest tape.

Do remember you have double stick tape. Do not take out tape to realize that dispenser has broken. Do get scissors so you can cut pieces of tape.

Do wish that you had just done this from the start.

Do not run out of regular tape before finishing toppers. Do count how many you've done and realize that if the adults don't have toppers you've made enough. Do realize that the pink Tinkerbell, which is probably the one daughter will want, hasn't been made. Do find another roll of tape in daughter's craft box. Do sigh in relief.

Do not let double sided tape attach onto itself and be completely unable to find starting point. Do use extreme caution when using scissors to cut into double stick tape roll to make a new starting point.

Do take pictures of final product and declare success!

UP NEXT: Making the cupcakes!


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