Anybody Want a Peanut?

How To Build A Better Diaper

2012-01-29T09:36:00.000-08:00

Moe is a boy. And as such, he likes to do one thing most boys enjoy doing, and that is sticking his hands down his pants. He has no sense that he shouldn't, so why not? Generally, we just shout "hands up!" and he takes his hands out and moves right along.

Generally, I wouldn't be too concerned about this but it has caused a pretty serious problem at night. As Moe is going to sleep, he will (even through his pajamas, which are one piece and zip up the back), try to put his hands down the top of his diaper. This then folds the top of the diaper down. Then, somewhere between midnight and 2 am, Moe pees. The diaper, in its folded and crumpled state, does not contain the urine, and Moe gets soaked and uncomfortable.

For the last two weeks, this has happened almost every night. Moe cries. I change him. We fall back asleep, usually fairly quickly. Sometimes in the morning this happens again. Some nights, he's going through three pairs of pajamas, and three diapers.

Obviously, this is problematic. Moe and I are both on a pretty serious sleep deficit. Jelly sometimes wakes up as well. And let's not dwell on the affect this is having on the environment with all the extra laundry and diapers.

We are seeking solutions. I tried giving Moe melatonin, thinking that if he fell asleep quickly, he would not have as much time to mess up the diaper. This actually worked, but, as generally happens with melatonin, he woke up on his own in the middle of the night but instead of falling asleep after a quick diaper change, he was up for hours.

Jeff has tried to engineer the problem. First, we put some regular underpants over the diaper, thinking an extra layer might help. It didn't. Next, Jeff put some stiff tape on the top of the diaper to keep the top from folding over. Instead, Moe was able to use the top of the diaper as a kind of handle and ended up just moving the whole diaper around. It leaked.

Last night, we started by putting painter's tape on the diaper, covering the diaper fasteners as well. We figured it would help but not be hard to change in the middle of the night if necessary. This failed within minutes.

Jeff followed this up with masking tape.

I can't comment yet on the success of this. Last night was a nightmare, as Moe had a pretty serious meltdown, from about 7-9. He was exhausted, but unable to fall asleep. He was in full sensory seeking mode, and we tried every calming technique we knew. Some would work for a bit, but as soon as we even mentioned going back to bed, he'd scream again (hooray for receptive language?!). We broke down and attempted to give him melatonin, but by then he refused to chew the tablets.

We had some of the liquid stuff, so after a quick dosage calculation (if 10ml is 2.5mg, how many ml would be 500mcg?), we got him to drink the stuff. I'm not sure it even mattered at that point, as he was already starting to slow down. We stopped hearing from him some time after 9:30.

The good thing is both kids slept in until about 8:45 this morning. Moe's diaper had a little leak, but Jeff insists this was not a failure of design, just length of wear. Further testing needs to be done.

Compare and Contrast

2012-01-24T21:15:00.001-08:00

After Moe was diagnosed with autism, I had to learn to stop comparing him to the other kids we knew. It took a while, but eventually I tossed out the milestones books, and replaced phrases like “should be able to” with phrases like “his own path” and “he’ll get there when he’s ready.”

An intensive one on one early intervention program necessitated leaving Moe’s regular play group, so I had fewer opportunities for direct comparison. Moe then moved directly into an autism preschool class, his peers all occupying the elite portion of the spectrum that allows them to be in this class. So most of the kids I see on a daily basis are also autistic.

I do still keep in touch with some people from the mom’s group. Many are friends, and I see their kids occasionally. Last week we all went out for sushi, and it was one of the first times since Moe’s diagnosis that I did not have to fight back tears as I heard the stories of what their kids were doing and how they were preparing for kindergarten.

It helps that I have a typical two year old as well and can finally relate. Actually, she’s what my husband and I call “hyper-typical.” She breezes past milestones with the greatest of ease. She plays with toys exactly as the toy manufacturers suggest. She doesn’t eat the crayons or play-doh. She speaks at the level of some three and four year olds and plays well with others.

I’ve learned to stop comparing Moe to his little sister as well.

I have recently started to become close with some of the moms from Moe’s class. I have many online connections, but these real life connections are building close friendships I haven’t felt since I stopped going to the play group. We chat as we pick up our kids from school, meet for coffee or breakfast, and exchange long emails when our kids have finally gone to bed for the night.

And once again, I find myself comparing. I am filled with such hope when I learn that one kid started talking at age five. Another finally just learned to use the toilet. These things are possible! I read the stories and books, but there’s nothing like hearing from someone you know to make you feel like it is possible.

I also compare the other way. One kid recently showed his mom the word “x-ray” on his iPad after he broke his arm. Another kid is finally speaking in sentences. The list of achievements goes on and on, and I am thrilled for them, but I also think “Moe can’t do that.” And I forget all about what Moe can do, and all that good stuff I learned about getting there when he’s ready.

But Moe has a way of reminding me. A few nights ago, as we were getting ready him ready for bed, Moe started saying “mom” over and over. At first I wasn’t sure. Was he just making random sounds? Was he saying he wanted “more” swinging? And then, as if he knew I doubted him, he looked and pointed right at me.

Moe will point or touch pictures or items to make choices but this was the first time in over two years I can remember him pointing like that. We were so thrilled with this that later that night we asked him to give a kiss to each of us in turn, first Mom, then Dad, then little sister Jelly, which he begrudgingly did, but did nonetheless.

And all of that good stuff that I learned came flooding back. And my heart was filled once again with “on this own path” and “when he’s ready” and lots and lots of hope.

And most importantly, with so much love for my perfect little boy.

Originally posted at Hopeful Parents, where I contribute on the 14th of every month.

You Can Thank Me Later

2012-01-20T12:47:00.000-08:00

Things are busy here. Appointments are being made. New therapies are starting. I have spent a lot of time on email and phone coordinating. That doesn't leave a lot of time for writing.

I apologize. So please accept this gift. You can thank me later.

Autism. Nonverbal.

2012-01-12T15:51:00.000-08:00

Autism is a disability.

Perhaps this is stating the obvious, but before I had a child with autism, I never thought about it this way. Maybe a learning disability, but not a disability disability. You know, like the kind that could be in the Special Olympics.

I didn't know anything. I was blissfully ignorant.

That is because autism is for the most part an invisible disability. Look at Moe and you'd probably have no idea he wasn't just like any other four year old.

And this is why it was so important to do something I had been putting off for a while. I finally got Moe this bracelet.

Moe is a runner, and although we all do our best to make sure he is safe, there is always a chance he could get away. And while he was running and enjoying his freedom, he would have no idea that he was lost, or that someone wasn't right behind him to bring him home. He wouldn't be able to ask for help. He wouldn't respond if someone called to him.

Losing Moe is my number one biggest fear. I worry about it twenty four hours a day. I have dreamt about losing him. And of course, there was the time he did get out of our yard.

The flip side of the bracelet has an ID number and simply says:

AUTISM

NON VERBAL

CALL IMMEDIATELY

Emergency professionals know to look for these bracelets, and so do a lot of other people. If someone did find Moe, they would know why he wasn't talking to them. And most importantly, there is an ID number on the bracelet, and that number is registered with MedicAlert. So when someone calls them, they know how to get in touch with us right away.

This is not an expensive service - just $20 a year. I hope we never have to use it, but knowing Moe is wearing that bracelet gives me just a little bit more peace of mind.

Now I just have to remember to put it on him every day.

Goop

2012-01-07T08:30:00.000-08:00

Moe, like so many kids on the autism spectrum, does not do well with unstructured time. When his time is not being actively managed, Moe tends to get into trouble. In our house, that includes things like splashing in the fish tank, climbing onto precarious spots, or taking off his pants.

Over winter break, Moe had a lot of unstructured time.

December 31. Two o'clock in the afternoon.

The house is a mess. We are having people over for New Year's Eve. They are planning to arrive around 5:30, and I am just starting to get the house ready when we hear an unfamiliar noise.

Jeff runs into Jelly's room to find Moe standing on top of her dresser. He is covered in something. What is it?

We notice the tube of lotion on the floor. Apparently he had gotten into that then thrown it on the floor when he had emptied it. But there was something else.

Shit. It's Vaseline.

I look up and things starts to come in to focus. Moe's new shirt is covered in Vaseline. I scan up. There is Vaseline on the wall.

My heart drops.

There is Vaseline all over the quilt hanging over the dresser. The quilt my mom made. I am devastated. I try not to panic.

Vaseline is a Petroleum based product. It is not something that you can just get out by throwing it in the washing machine.

We go into action mode. I go online, and find some ways to get vaseline out of fabric. The most promising one involves isopropyl alcohol. But I'm reluctant to just follow instructions from a random person on the web. Jeff thinks I should take the quilt to a professional cleaner, but there are a million dry cleaners and I don't trust them to do a good job. Yelp isn't helping.

I think of calling a local quilting shop, Eddie's Quilting Bee. Jeff makes the call. They tell him to call Sally and give him a number. We know nothing more. Jeff dubs her The Oracle.

We call Sally, who instructs us to find a product called Goop, then to wash the quilt in the washing machine with laundry soap (not detergent). Jeff tells me Goop is available at Walgreens. I leave the house.

I drive to Walgreens. No Goop. Then I drive to Rite Aid, CVS, O'Reilly Auto Parts, Pep Boys and OSH. Jeff calls Home Depot and Target. No Goop. And no soap. After an hour, I come home. Jeff tells me Goop is at Walmart - not Walgreens. I remarkably do not kill him. The closest Walmart is about 15 miles away. We throw the kids in the car, and head over.

The parking lot is a mess. I drop Jeff off and drive around with the kids. Jelly falls asleep. Moe and I share french fries from the McDonald's drive thru. At 4:00 I hear them ring in the new year in London. Eventually, Jeff texts me. He has Goop!

I pick him up. "Where's the laundry soap?" I ask. He forgot it. Again I do not kill him. I remind myself he is helping me.

He goes back in. I park the car and wait while Moe tries to wiggle out of his car set. The fries are gone. Jelly wakes up.

Eventually Jeff gets the soap, and we drive home. Jeff goes to work on the quilt. Goop smells a little like gasoline.

Our friends arrive and we have a lovely new year's eve with orange champagne cocktails and play Just Dance on the Wii.

We have no idea how to use a bar of laundry soap. Eventually we give up and use detergent.

I say goodbye to 2011.

The quilt is not perfect but it looks pretty good. But even after three washes, it still smells like Goop.

Looking Back, Looking Forward

2012-01-02T12:00:00.000-08:00

2012. So, far, it feels a lot like 2011. Funny how that happens.

And yet, as I look back I see how much has happened over the course of the year.

In 2011, for the first time, I walked with family and friends in the Bay Area Walk Now for Autism Speaks, I went to BlogHer and wrote a novel for NaNoWriMo.

Moe turned 4 and Jelly turned 2.

We faced many challenges with Moe, especially around sleep and aggression. Moe also got his first stitches.

I lost a friend to cancer.

What will this year bring? Will this be the year Moe learns to speak? Will this be the year we are able to travel to visit family? Will this be the year both kids will be potty trained? Will this be the year we sell our house? Will this be the year I stick to some kind of exercise routine?

And if none of those things happen, will this be the year I am able to find peace and acceptance of where we are, no matter what?

Happy new year to all of you! Thank you for reading this blog, sharing your lives, advice and support.

For those of you who are new to this blog, or want to look back, here are a few of my favorite pieces from the year:

January
Dreams of a Parallel Universe

February
Unspoken But True
Forever Linked
Fish For Sale

March
No More Wishes Redux

April
One Ranunculus
Notice of Eviction

July
Love on Point

October
Steve

December
Occupy My House

A Very Long Break

2012-01-01T09:34:00.000-08:00

Two more days.

On Tuesday, life returns to what passes for normal around here. School will start. I will wake up on time, pack lunches, get kids dressed and fed and out the door.

I cannot wait.

This has been a difficult break for us, probably the hardest one yet. Moe's aggressive behaviors increased throughout the break, reaching a peak on December 26-27. For those two days, it seemed every interaction we had with Moe involved him grabbing or pulling us. He went after the dog repeatedly. We would grab his hands and sharply tell him "no!" but often he would just continue to come at us, over and over. One time he just ran up to me from behind and pushed me. He grabbed Jelly when they were riding in the double stroller.

We couldn't figure out why, only that it was constant. Was he sick? Just bored or missing the routine of school? Were these outbursts sensory in nature? Moe wasn't sleeping well, but we couldn't tell if that was the cause or another symptom.

Things have gotten a little better over the past few days, and we learned that a softer response tends to extinguish the behavior faster.

Jeff also installed Moe's Hanukkah present, a hammock chair/swing that Moe took to immediately, and has been a perfect respite when things are overwhelming, relaxing spot to hang out with a book, and excellent sensory replacement for banging the rocking chair repeatedly against the wall. The installation was a big project, involving things like joists and eye hooks and, in what may seem like a non-sequitur but was actually crucial to the process, walking through setting up WiFi at my in-laws' house.

We also feel pretty strongly that this aggressive behavior is not just sensory in nature like we originally believed, and was so often the case with Moe in the past. There is still an aspect of that, as when he's overly excited, and wants to calm down. But there definitely seems to be an attention seeking component as well, as if he's telling us "Hey! I'm excited!" or "I'm bored" or even "feed me." He's figured out that this "bad" behavior gets a response, even if it is a negative one (which to him, may not seem negative at all). If this is the case, it would be a very good thing.

Back in August, when I wrote about Moe pulling hair at school, his old teacher, told me "aggression is interaction."

I'm starting to believe her.

Santa's Little Green Balls

2011-12-25T21:18:00.001-08:00

Every year on Jeff's birthday (I think some of you refer to this day as "Christmas"), I make him whatever cake he wants. For a few years, it was always cheesecake, but a couple years ago I made him a Key Lime cake. This year, he requested that cake again.

This cake, although called a key lime cake, doesn't actually call for any key limes, using regular limes instead. So, being somewhat of a lime purist (but who isn't?), I decided to step it up a notch and use real key limes.

This turned out to be a Very Bad Idea.

In case you aren't familiar with key limes, they are much smaller than their standard equivalent. They are little spheres, walnut-sized or smaller. They are perfect for, say, garnishing a margarita, but, as it turns out, not ideal for my purposes today.

This particular cake has a lime-sugar syrup that you pour on the cake. This step calls for a half cup of lime juice, which I was planning to squeeze by hand, requiring me to slice each lime in half. And, being that these little balls of joy are round, they roll. So, yes, I also sliced my finger.

It wasn't stitches-worthy, but had to be dealt with, and of course happened when Jeff was in the shower, and Jelly was "helping" me, which at that moment consisted of making handprints in the flour on the counter. She refused to leave the kitchen, so I had to carry her out with my non-bleeding hand, while still maintaining constant pressure on my finger, and holding it above my heart for good measure.

Bandage applied, I looked forward to the opportunity to get a lot of citrus juice in the cut, and returned to slicing the little green balls. When I thought I had enough limes, I started juicing what I now refer to as Satan's testicles.

I quickly learned that each little green nugget of joy gives out about one teaspoon of juice. I needed half a cup. I asked Siri and she told me that there are TWENTY FOUR teaspoons in a half cup. After juicing about twelve limes, I couldn't take it any more, and went out to pick a few regular limes off our tree and finish the job.

Hey, at least I didn't resort to juice from a bottle.

(I'm totally doing that next time.)

Limes juiced, syrup made, and cake in the oven, I embarked on the cream cheese frosting: cream cheese, margarine, powdered sugar, and one third of a cup of lime zest. Wait, what? How the hell am I supposed to zest these little f-ing limes, especially now that half of them are already juiced and squashed?

Do you know how many key limes it takes to get a third of a cup of zest? Neither do I.

I did my best, got as much zest as I could, which turned out to be plenty because this recipe makes about a gallon of frosting, about a third of which I used.

Also, it does not take a genius to predict that I zested my knuckle.

In the end, the cake was delicious. And now I have a bag of unused key limes. Margaritas, anyone?

Domestic Drift

2011-12-21T17:58:00.000-08:00

One time we lost the remote. I'm not talking about the slipped behind the couch cushions kind of lost, this thing was gone. At least until I remembered that Moe had been playing with the remote, and that I had taken a bag of clothes I had been sorting back to Moe's room. Sure enough, the remote was in the bag in Moe's closet.

This phenomenon of household items finding their way around the house is called "domestic drift." In our house, this is more like Household Hurricane, specifically Hurricane Moe, who has a tendency to run into a room, pick up a toy (or more likely some small piece of a toy) and run away with it. Usually, he drops it somewhere where it is easily spotted, but sometimes things become well and truly lost.

This drives me crazy. I cannot stand things like missing puzzle pieces, and always try to make sure I have every piece before cleaning up a toy. But inevitably, something will be missing.

The best thing to do is generally just wait and the piece will turn up eventually. But sometimes you get a brand new toy that has three penguins and then one day later you only have two penguins and you really just want to find the blue penguin because you know it is somewhere in the house and most of the doors have been closed all day so where the f*@# could it be? And other times, you bring out the cool Hanukkah toys, which had all of their pieces, but in two days have lost two candles and one flame.

It will be a miracle if I still have all these pieces after 8 days.

I just spent the last 15 minutes looking for above items. As I looked, I found a remarkable number of bits and pieces of things hidden in various bins and buckets, so I spent the time just walking back and forth from room to room replacing things as I went. Pieces of toy food went back to the play kitchen, magnets in Moe's room, train tracks in Jelly's, Legos back to Moe's room, etc. It was remarkably satisfying.

But still no penguin.

Update: I have located the penguin! It was in the fish tank. I am not making this up.

Occupy My House

2011-12-16T13:02:00.000-08:00

We are the One Percent.

The One in One Hundred.

We are not rich, and we are not privileged. Not in a way the 99% understand, anyway.

We are the families of children with autism.

Most of the time, you may not notice us. Our kids' disabilities are often invisible. They look just like any other kid. Maybe even a little like your kid.

But you might not notice us for other reasons too.

You might not see us at the park, because we are afraid that our children will run away, that even one second of distraction could end in tragedy.

You might not see us at a restaurant, because our kids might not be able to sit still for a whole meal or eat very few things.

You might not see us at play dates because our kids don't know how to interact appropriately with other kids, or may get overwhelmed at new places.

You might not see us at school because we're on the other side, in the special education pick up line.

You might not see us at the grocery store because our kids can be overwhelmed by all the lights and sounds, or don't understand how to stay close to us even though they are too big to fit in the cart.

You might not see us at the mall because it is hard to change the diaper of a four year old in a public restroom.

source unknown

You might not see us with our spouses at nice restaurants or movie theaters because it is hard to find a babysitter we trust to keep our kids safe.

If you do notice us, it is probably because our kids are doing something you don't understand.

He might be giggling for no apparent reason, or bouncing in his chair. She might be flapping her arms or having a temper tantrum. He may not look at you when he speaks. She may not speak at all.

And sometimes we are so tired, because our kids often have trouble sleeping, or we lie awake at night worrying about their futures, that we don't have the energy to go anywhere.

Sometimes the one percent recognize each other when we are out, but despite our rising numbers we are still few and far between.

We love our kids, just like the 99% do. We are proud of them, and believe in them. We fight for their right to have a safe, accepting place in this world. But the world is a scary place for us one percent.

And so often we stay at home and surround ourselves with what we need to get by.

The right foods. The right toys (even if they aren't "age-appropriate"). A fenced-in backyard. Extra locks on the door. A long twitter feed where we can connect with the rest of the one percent.

And connect we do. So though it may be easy for the 99% to forget we are here, just try crossing one of us. Or telling us our kids can't do something. Or denying them an education. Or respect.

Try it and you will hear the voices of the one percent come together from around the world. We are loud and unafraid. We stand by each other. We help each other by telling our stories and sharing in the joy and sorrows.

We occupy our homes.

We are the one percent.

I don't actually know the number of families with autistic children, so the numbers are probably a little different. Approximately one in one hundred and ten children are diagnosed with autism, but many families have more than one child diagnosed. So I'm approximating. And of course, there are many other types of special needs families who experience some of the same challenges and isolation. Also, the above are just examples. Every child with autism is different, and I'm not intending to represent everyone.

Writing Our Story

2011-12-14T11:13:00.000-08:00

Today I'm over at Hopeful Parents, where I contribute on the 14th of every month. Come over and read about how writing a novel has made it so much harder to keep on blogging!

And if you feel so inclined, please leave a comment over there!

Sensory Battles

2011-12-04T14:41:00.001-08:00

November was a good month.

Jeff took a week off while he was in between jobs. Then he started his new job, which is right down the street and around the corner from Moe's school. No more commute! It helped make taking our house off the market for a while feel like the right thing.

The kids were healthy and, for the most part, sleeping well. The massive schedule upheaval after the time change had finally worn off. There were some ups and downs with the extra days off during the month but things were pretty stable.

The month ended with a visit from my parents and a pretty successful Thanksgiving holiday.

Oh how I miss November.

Because December sucks.

Moe and Jelly both got colds and have had trouble sleeping. Moe is stuffed up and his sensory needs have gone through the roof. Starting at school on Friday and continuing through the weekend, he has been grabbing, biting and pulling with very little warning. Our dog Berkeley has gotten the brunt of it.

In fact, Moe has decided that it is so rewarding to pull on the dog and grab her fur, her tail, or her paws, that he has been actively going after her. Moe has hurt Berkeley several times, and she can't figure out to just stay away from him. Maybe we need to add doggie Stockholm syndrome to her long list of issues.

Jeff and I have been on edge all weekend, trying to keep Moe and the dog separated. We've tried calming activities and energy busting activities, and they all work for a bit, but then the sensory monster comes back. We can't quite figure out what is causing it. Is he tired? Upset about something? Processing something? About to make an amazing developmental leap? (Wouldn't that be great?)

This afternoon got so bad that after Moe's bath (which was supposed to help him fulfill some of his sensory needs but ended up riling him up more), Jeff couldn't even get Moe's clothes back on him. Moe was laughing, kicking, and pulling. He was physically unable to keep still. And he's laughing the whole time, which we understand is also not in his control, but makes it quite frustrating for us. Jeff put Moe in his bed and closed the bed tent to help him calm down. When we went to check on him a few minutes later, he had taken off his pull-up and peed all over the bed.

Fun. Times.

I know Moe can't be happy like this, although he doesn't seem too upset about it. He was manic and out of control and it scares me. Berkeley has been tolerant, but she is a dog and could bite (though she never has). And what if he hurts Jelly? Moe is only four, and so I always have to go down the "how will I handle this when he's bigger?" path until Jeff yanks me back and reminds me to take it one day at a time. Which I find absolutely impossible to do. With Moe, behaviors tend to come and go and we rarely understand why.

And poor little Jelly has to witness all of this stress and yelling and frustration. She takes it in stride, but she notices. Today I saw her push the dog out of the way, and although she got an immediate time-out, I felt awfully hypocritical because I'm sure I pushed the dog out of the way a hundred times today.

This is the worst I've seen Moe in a long time, and it has lasted longer than I remember something like this lasting before. We gave him melatonin tonight and he fell asleep quickly. I hope that he sleeps through and that a good night's sleep will help him regulate tomorrow. I hope he doesn't hurt anyone at school tomorrow. I hope that December improves.

I hope, I hope, I hope.

What's Next?

2011-12-01T12:17:00.001-08:00

I participated in NaNoWriMo this year for a few reasons. These reasons may include one or all of the following:

I am crazy.
At 38 years old, I still don't feel like I've found my "calling" and I wanted to see if writing could be it.
I've always wanted to write a novel and it was time to try it.
The voices in my head made me do it.

Now that I've completed it, I've been thinking about what is next. First, the book is in no way ready to publish or even consider giving it to anyone in publishing, in a publishing-related field, or who might walk close by an office building that houses a publisher. Although the book is a complete story, it probably requires about another 50,000 words to add things like character back stories and secondary story arcs. So right now, I need to decide if this is a story I want to work with.

If so, there is a lot of work to do. That work includes editing the many extraneous words I used, because during NaNoWriMo, if something can be said in two words that you said in four, you should probably try to add a few more words.

If not, the first little bits of other stories are starting to percolate in my head. I've signed up for a fiction writing class to stay motivated. The class focuses on short stories and chapter writing, and may be a good way to re-write some of my current novel or help shape some ideas for another one. I haven't taken a creative writing class since high school English! You do not need to try to figure out how long ago that was.

And of course, I will continue blogging. And when I'm ready to hit publish, I just hit the "publish" button. Like now...

This post inspired by the prompt "What's Next?" at Kick in the Blog.

One. Big. Update.

2011-11-29T16:19:00.001-08:00

Hello, blog. I've missed you.
Hello, readers. Anybody still out there?

Rather than write a bunch of posts over the next week catching everybody up on what has been happening over the last few weeks, I'm going to update you all on everything here in one big update. I'll try to be brief, but since my month has been all about words, words and more words, it won't be easy.

I wrote a 50,000 word novel this month. And now I have a pretty crappy novel (but a still, a novel!) and an updated "Winner!" badge over there on the left. The novel is called Usually Sometimes Never.

Novel writing has become such an ingrained part of my days over the last month, that I can no longer guarantee the accuracy of anything I write here. The line between fiction and reality has officially blurred. At least until I find my truth glasses. (Ooh - truth glasses. Now that's something I could put in a novel!)
-
Thanksgiving at my BFF's house went better than expected. Moe ate a lot of food, which kept him occupied and let us all eat. Jelly ate only ice cream, but she enjoyed drinking water out of my crystal glass. We still had to follow Moe around the house when we weren't eating, but I guess we Jeff is getting used to that. Also, Jelly pooped on the rug.
-
All of Moe's genetic tests came back normal. While that's Good News, it is still somehow unsatisfying.
-
The dog threw up in the back of my car yesterday.
-
I had a flat tire over the weekend. There was a nail in the tire. This is the second time this has happened. I suspect my neighbor. (Not really, but again, would be a cool character.)
-
When I put Jelly in the car after preschool yesterday, she said "no weapons!" I can only assume this was her political commentary on the use of pepper spray by police on Occupy protesters.
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We went to an awesome concert on Sunday called the Kizuna Family Concert. Professional musicians performed classical music for kids with special needs and their families. Moe and Jelly loved it.

Why, yes that is my child. Sitting. Like, in a chair.

Hope you all had a nice Thanksgiving holiday. It's good to be back.

Awkward School Photos

2011-11-18T21:22:00.001-08:00

So there are these autism bloggers. You've probably heard of them. Their names are Dani G and Lynn. I like these bloggers a lot, even though they probably wonder why I'm never on twitter anymore and hardly ever comment on their blogs. (Or maybe they don't wonder at all. *Sniff*)

So these girls are doing a blog hop and I've reached my NaNoWriMo word count for the day (see: above).

You're supposed to post an old-school photo of yourself. I thought I didn't have any of these, so I might get out of this. But I found some.

And here they are.

Let's see. Pre-80s new wave haircut, front teeth still enormous and not yet broken, ears are pierced. I'm guessing fourth or fifth grade.

I think this is my high school senior photo. I was young for my class, still 16. The braces were supposed to have been off by then. Thankfully, they were removed before I went off to college. I have no idea why I'm squinting with one eye.

And now I'm going to go all Jedi mind trick on you and make you forget the above pictures by reminding you of this one:

More tulips!

And Lynn, the rest are for you.

Old castle. Now with more ivy!

I'll take what's behind door number 1!

Why yes, my mom would like more mai tai.

Will Power

2011-11-17T15:23:00.001-08:00

The other day, someone posted this picture on Facebook:

photo credit unknown

I had a lot of thoughts about this. Like first of all, there is no way getting that body is simple. If it were, we'd all look like that, and we wouldn't marvel at this woman. I'd also hazard a guess that this woman (and her photoshop expert) worked very hard on this and that she wouldn't consider her daily exercise routine "simple."

But this is not a post about body image or exercise. It is about will power.

For a little over a year now, Jeff has been going to they gym three days a week. He has worked very hard, but the most important thing is that he goes. Every week, no excuses. If he has to miss a day, he makes it up. And guess what? He looks good. He has muscles and everything. Now he's doing CrossFit and I get tired just listening to his description of the workout of the day. It's not like Jeff was always a super fit, athletic guy. But he decided this was important and so he made it happen.

I bitch and moan about not having time to go to the gym, and yes, it is easier to a certain degree for Jeff because of his work schedule. But the truth is he gets up in the 5:00 hour to be able to work out and get home to take Moe to school. That was our deal (since otherwise I'd have to get both kids ready and to school in the morning). He made the time, even if it is a time I'd rather not be awake. And I could do that too, if that's what I chose to do.

I recently heard an interview on NPR with John Tierney, who wrote a book called Willpower. (You can listen to the story here.) I do not generally have a lot of will power. If there are cookies in front of me, I will eat them. But Tierney writes that will power is something that can be trained.

Willpower really is like a muscle. It gets fatigued as you use it during the day. But over time, you can increase your stamina through regular exercise. Simple exercises like forcing yourself to sit up straight, or using your left hand for something that you ordinarily use your right hand for - those have been shown in experiments to improve self-control for all kinds of other tasks in your life.

So if you are trying to lose weight or exercise more, and find you just aren't sticking to it, you can try something easier for a while to build up your will power. You can also fatigue your will power. And I'd guess that like your physical muscles, if you stop working out your will power, it will get soft and mushy and you might have to start working on it again.

This month, I've been writing a novel for NaNoWriMo. I've never written this much on a consistent basis. But I want to finish and so I'm doing it. Even on days that I would rather just sit and watch Grey's Anatomy, I write a minimum of 1,667 words. I haven't gone beyond that many days, but I've hit my goal every day except one. And I made up those words the very next day.

I can only remember one other time when I really stuck to something like this, and that was when I was pregnant and had to be on a restricted diet for gestational diabetes. I was really bummed about having to do this, but I did not want to have to go on insulin shots, so I did it. And I know it worked because I had the blood tests four times a day to prove it. And it wasn't really all that hard.

The nice thing about both of those was the constant feedback that I was on track. Every day I update my word count on the NaNo website, and I can see a progress bar going across the screen. How thrilling it was to get past the half way mark! It helps that writing is something that I enjoy. But in both these cases, it may also help that there is an end date. When I was pregnant with Moe, I could say "I only have to do this for fourteen weeks." For NaNo, I know it's all done on November 30.

But what a waste that would be, to spend a month working on my will power muscle to just let it atrophy again. Maybe I'll actually start going to the gym.

For real this time.

*Okay, I have no idea if this was photoshopped or not. Most pictures like this are to a certain degree (i.e. strategic shadows, etc.)

Problem Solving

2011-11-11T13:52:00.001-08:00

I don't often talk to much about Moe's strengths on this blog, and for that I'm sorry. It's not that I don't think he has any, but they do often get hidden under the behaviors, sensory needs, and language delays. They're also not the things I'm processing in my own mind, so they're not quite as therapeutic or interesting for me to write about.

Except when those strengths become problems. No, not problems exactly, at least not for him. Moe, for example is a pretty good problem solver, especially when there is something he wants. He is also quite a good climber (hypotonia be damned!). Even before he could walk, Moe figured out how to push the foot stool to his crib so he could get higher.

Moe likes the iPad but he is not allowed to use it unsupervised. If you're unsure why, you may remember the demise of my phone. So I keep it, and other things out of his reach. One of my favorite landing places for all things electronic (as well as DVDs, remotes, and random pieces of junk) is on the mantel over the fireplace.

So today, I came into the living room to find Moe sitting on the couch, playing with the iPad. And then I saw this.

I promise you that is not where I keep the rocking crocodile. It's all about motivation, right?

Expecting Adam

2011-11-09T10:49:00.000-08:00

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

No.

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

-

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

No.

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

-

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

No.

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

-

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

No.

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

-

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

No.

But I'm working on it.

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

There Has to be a Better Way

2011-11-06T17:51:00.000-08:00

I have never met another kid like Moe. "You've met one child with autism..." and all that. But seriously, I've never met, read, or heard about another kid who is quite like Moe. And maybe that is because I don't often write about what it is like at our house when Moe is at home.

Unless he's sleeping, Moe does not stay still. Almost ever. The boy is in constant motion, and because he doesn't really play with toys, this means he is always getting into trouble. We try to make our house as Moe-friendly as possible, child-proofing the doors to rooms we'd rather he didn't go into unsupervised: our bedroom (in which he has cracked a lamp and torn the snooze off my alarm clock), the office (which now, once again, has a fish tank in it), and the bathroom. But Moe climbs kitchen counters, his shelves, his dresser, behind the TV. He'll climb his bed and go on top of the bed tent, laying on it like a hammock. He's already bent two of the poles.

Did I mention that he broke his crib tent by climbing on top of it? It inverted and when I tried to fix it, I broke the poles. So technically, I guess I broke it. Either way, I had to buy another one, and those cost less than half of what the bed tents cost.

Occasionally, Moe will stop and read books or flip through magazines but even then he's making a mess, pulling all the books out of the shelves, crumpling the magazine pages or tearing them up. As far as I can tell, he's not destructive on purpose, just not neat or careful in any way. And he's a sensory seeker, so it's fun.

I love to spend time in the back yard, but even that requires constant supervision, as Moe puts everything in his mouth. Ideally, I prep the backyard before we go out, making sure Berkeley's dog run is closed and latched and that all fruit that has fallen from the trees has been picked up lest Moe put a rotting or half squirrel-eaten orange in his mouth. But no place is truly safe for him. You remember the time he ate a snail, right?

When we're out of the house, Moe just wants to run. He loves to run free, but doesn't have the instinct to stay close (or stay out of the street, or other people's picnics), so either Jeff or I has to follow him around. If we're at a busy place, like the farmer's market, or I'm by myself, I have to keep the kids in the stroller. Moe is generally pretty happy there, but he doesn't get much exercise nor does the experience help him expend some of this excess energy. We try walking with Moe, holding his hand, but he'll drop to the ground over and over. It's frustrating for all of us.

It's the same when we visit other people's houses. As soon as we arrive, Moe wants to explore, and by "explore" I mean find the nearest bathroom and splash his hands in the toilet, or eat some crayons, or take food off the table. Honestly, I'm envious of people whose kids are obsessed with dinosaurs, or bugs, or Thomas, or, frankly, anything. I'd love to have something in my back pocket I could let Moe obsess about for an hour or three if needed. Even the iPad or TV won't keep him still.

It is worst on the weekends, when Moe doesn't have the structure of school for most of the day. Part of the problem is that I think Moe is bored. I am able to occupy Moe's attention for very brief intervals of activity, usually just a couple minutes, sometimes up to 15 if he's interested and I'm working very hard. But I have another kid who is also very demanding, a dog, a novel, a blog, and a husband, and even if I neglect most of those things, I still can't devote constant attention to Moe for over 12 hours a day. I want to. But I just can't.

So we end up frustrated and yelling a lot, which makes me sad. I don't want my relationship with my son to be based around me telling him what he can't do. Stop climbing. Get out of there. Put that down. Not for mouth. Be careful. Repeat.

If your kid is like Moe, what do you do? How do you manage your time at home and when you're out? And, if your kid is older, has it gotten better? Or has your child just gotten bigger?

Theodora: Actress, Empress, Whore

2011-11-03T06:00:00.000-07:00

It is not often that I get to use the word "whore" on my blog. It is hard to imagine another situation in which I will do so. But today I'm reviewing the book, Theodora: Actress, Empress, Whore: A Novel, by Stella Duffy. (My book club will also be quite smitten with the fact that there are two colons in the title.)

Imagine the story of a young girl, born to an animal trainer, living a modest but comfortable life. When her father is killed by one of his bears, she is reduced to living just off the street, sold into a life of stage acting and prostitution. She is good at both jobs, performs for many wealthy and influential men, and quickly becomes well-known in the fashionable city. But this girl is also smart and quick-witted, and although her mouth can get her into trouble, she learns a lot about human nature, and rises well above her natural born station, finding God and power along the way.

Sounds like the typical American rags to riches Hollywood movie, but this is no Pretty Woman. This is the story of Theodora, Byzantine empress and wife of Justinian I. Duffy's novel is entertaining and made me want to learn more about this time and Theodora's fascinating life. I'm sure I could go to the library for that, but seems that HBO has optioned the rights to Theodora. Although a series may not be historically accurate, I'm sure it will be wildly entertaining.

This was a paid review for BlogHer Book Club. All opinions expressed are my own. Be sure to head over to BlogHer for some discussions on Theodora and look for the #BHBC and #Theodora hashtags on Twitter!

Happy Halloween

2011-10-31T13:21:00.000-07:00

Happy Halloween from my little sweeties!

Moe's school has a Halloween parade every year. I got a lot of really cute pictures of Jelly.

She loves this costume so much she cries
every time we take it off of her.

But Moe is much harder to capture on film.

Anybody want a peanut m&m?

And here is Moe marching in his school's Halloween parade! I was so proud of him. Although you'll notice he isn't exactly facing forward. All the special ed teachers had their tie dye on.

And tonight...our first attempt at trick or treating! Wish us luck :)

NaNoWriMo is Almost Here!

2011-10-29T09:26:00.000-07:00

November is just a weekend and one candy filled day away. For me, that means three days to finish outlining, character sketching, and possibly sleeping, because November 1 is NaNoWriMo Day 1!

You see, November is National Novel Writing Month. I signed up for the challenge: 30 days, 50,000 words. That's 1,667 words a day for those of you attempting to do the math in your heads right now. Don't worry if you couldn't. We're writers here, not mathematicians.

At the end, I'll have my first novel and quite possibly a bad case of carpel tunnel. The novel may not be any good, but that's okay. NaNo emphasizes quantity over quality. Editing is for December, as they say.

So, if I don't write here as often as I usually do, you'll know why. And if you forget, just look at that badge over there on the left.

Things I Have Done

2011-10-27T09:26:00.000-07:00

Last week, I wrote about 22 things I've never done. This week is the follow up to that.

I'm 38 and I have:

1. Eaten gyros in Greece, gelato in Italy and Fiduea in Barcelona.

2. Taken a 6 week bus tour across the U.S.

3. Been to Hawaii. Not on the bus tour.

4. Broken my two front teeth.

5. Been on a hot air balloon.

6. Been a camp counselor.

7. Celebrated my 30th birthday at French Laundry.

8. Tried out for a game show.

9. Starred in a TV commercial.

10. Had my picture taken with Jeff Garten (Barefoot Contessa Ina Garten's wife).

11. Broken up with someone on a plane.

12. Painted every room in my house except the kitchen.

13. Had a recurring dream that involved me being tossed in a salad.

14. Had two imaginary friends.

15. Owned a parakeet named Lucy.

16. Been on a gondola ride in Venice.

17. Been on a gondola ride in Las Vegas.

18. Met Bill Gates (twice).

Peter DaSilva for The New York Times

19. Taken a mud bath.

20. Buried my little brother.

21. Gotten out of a speeding ticket.

22. Lived a pretty good life so far.

This post written for Mama Kat's Pretty Much World Famous Writer's Workshop.

For Better or Worse

2011-10-26T13:59:00.000-07:00

For better or for worse.

I said it.

I meant it.

It's easy when things are better.

It's hard when they're worse.

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

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

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

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

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

But every marriage has a breaking point.

What's yours?

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

My iPad is Not Magic

2011-10-25T11:53:00.000-07:00

The internet has been abuzz (or, more appropriately, atwitter) with discussion of the 60 Minutes piece called "Apps for Autism" (watch the video here). Indeed I got many calls from people reminding me to watch the show, which I appreciated because I had forgotten to set it to record earlier that week. I was excited to see it and maybe learn some about some new apps I hadn't known about.

I enjoyed the piece, but I wasn't blown away. As someone who is pretty tech-savvy and who has been following the iPad as a communication tool for some time, the piece didn't tell me anything I didn't already know. And I had some issues with the content as well.

Let's talk about Josh, the 27 year old who was shown using the iPad to communicate quite adeptly, including answering interview questions and ordering food at a restaurant. I admit I did tear up a bit at the thought that my Moe may someday have a voice, even in electronic form. However, text to speech devices have existed for some time. Even without one, Josh was clearly able to use picture icons to communicate, yet they showed him spelling out words on a piece of paper for the interview. As Dana over at Uncommon Sense said, "Are we to believe that for 26 years, Josh has used only a (poorly) laminated paper keyboard, and then one day he got an iPad and it changed everything?"

And what about the little girl they were teaching to count? First they show her in front of a piece of paper with the numbers 1 and 2 printed on it. Big surprise! She wasn't interested. Would you be? Then they show her an iPad and numbers go scrolling by. The numbers got so much higher than 2! And that girl watched those numbers. But I didn't actually see anyone teaching her to count in either scenario. Yes, attention is a first step to learning, but nothing about that clip showed how a teacher or parent might use the iPad to teach someone with learning difficulties to count.

I did appreciate the teacher who said the iPad isn't for everybody. Moe doesn't yet have the attention, or the language skills, to use an iPad. He likes it - but he mostly likes to bang on it, which is why I got him a drumming app. He likes to push the home button (would somebody please make a way to lock it from inside an app?), which just takes him out of the app I'm trying to teach him to use. We've been practicing with the free version of a communication app called Sono Flex Lite, but I think the iPad may be simply too exciting for him. We have better luck with paper icons and velcro.

We have had some success with receptive language skills with apps like Sound Touch, and the Kindergarten.com apps (shown in the piece). Like the boy who loves opera, Moe seems to be able to identify more items than you would think. Moe has challenges not just with forming speech, but with all language and communication, and so just giving him another way to communicate is not the same as teaching him how to communicate.

Don't get me wrong. I think the iPad is incredible. It is expensive (and the Proloquo2Go communication app costs another $189.99), but it is much cheaper than, say, an $8,000 Dynavox. The iPad is small and portable and easy to navigate. And, perhaps most importantly, it is cool; there is no stigma in carrying around an iPad. So yes, for some people, and I'd imagine especially for people who have some experience with some of the clunkier alternate forms of communication, the device is life-changing.

But it isn't magic. There are a number of reasons for communication difficulties, and not all of them are solved by the iPad. And despite the message sent by the 60 Minutes piece, all autistic kids aren't born knowing how to use one. They need to be taught to use it, shown how it can help them, and for some it really does. For others, like Moe, it is just one more useful tool in our growing collection.

Searching for Answers

2011-10-24T12:19:00.000-07:00

When Moe was first diagnosed, our developmental pediatrician, Dr S, ordered some blood tests to look for genetic abnormalities. Moe had had a rough appointment already, and was ready to go, so we didn't want to do the tests that day. We asked Dr S if the tests did find anything, would our approach to intervention be any different. She said no, so we decided to wait. Eventually the order expired and we never had the tests done.

Last year, as part of one of the research studies at Stanford, Moe had to get a blood test. It ended up not being that big of a deal, so I thought about calling Dr S to re-order the tests. Finally, last week, I sent her an email. I also asked her if she thought an MRI could be helpful. She said the MRI isn't indicated, but ordered the genetic tests.

I'm not sure why I want these tests done now, over two years later, but I've been feeling quite frustrated with Moe's very slow, and not necessarily steady, progress. Every autism book I read, even the ones without the miraculous "my child no longer has autism" endings, show children who make pretty significant progress. Even though I can see small changes in him, Moe's deficits in the major areas of speech, attention, and impulsiveness, seem not very different (or perhaps even more severe simply because Moe is bigger) than when we first started.

So this weekend, we took Moe to the lab and had the blood tests done. Moe hated it and cried quite pathetically the whole time. Jeff took him in while Jelly and I stayed in the waiting room. We could hear him and Jelly kept saying "Moe's crying. Let's go help him." I knew he wasn't in pain. He just hates being restrained in any way. Moe barely flinches at shots, but can't stand when I try to cut his fingernails. When Jeff and Moe were finished, Jeff confirmed my suspicion. Moe was quite upset before the needle even made an appearance.

And now we wait for the results. I'm more anxious than I thought I'd be, though I suspect we won't find anything unusual. If we do, we'll have the answers as to "why" and we may have a better understanding of his likely progress. And even if the results don't change how we approach Moe's interventions now, new research is coming out all the time. Many parents have long suspected that there are a number of autism sub-types, and being able to classify each child's particular type of autism may help direct - and develop - the most helpful therapies in the future.

Things I've Never Done

2011-10-20T07:00:00.000-07:00

I'm thirty-eight years old.

And I've never:

1. Been fired

2. Ridden on a motorcycle

3. Gone skydiving

4.Watched a puppy being born

5. Worked as a waitress (see #1, above)

6. Eaten a McRib sandwich

7. Seen Gone With the Wind

8. Worn false eyelashes

9. Run a half-marathon

10. Been on the cover of Rolling Stone

11. Cooked a live lobster

12. Gotten in a fist fight

13. Dreamed in Spanish

14. Hosted my own radio show

15. Officiated at a wedding

16. Written a novel

17. Set a world record

18. Been to me (Charlene fans out there? Anyone?)

19. Sat in the front row at a Depeche Mode concert

20. Learned to play Bridge

21. Pierced my nose

22. Owned a cat

This post inspired by the prompt "list 22 things you've never done," from Mama's Losin' It as borrowed from The Pioneer Woman.

The Small Picture

2011-10-17T13:51:00.000-07:00

We often tell ourselves to "look at the big picture." In business, for example, it makes sense to look at the larger competitive landscape rather than get caught up details of a particular product design. But sometimes, the story is in the small picture.

Moe doesn't talk, and it is sometimes hard to look past that. When we started speech therapy two years ago, we thought for sure Moe would have some language by now. And if I focus on that, it feels like he hasn't progressed at all. But as our OT always points out, Moe is changing. He doesn't chew as much as he used to. That nasty spitting habit he developed at the start of the school year seems to have all but disappeared. It is hard to see that going from biting to spitting to whatever is going to come next is progress, but what is important is that Moe is different now than he was even a few weeks ago. Change signals development, and that's what we want to see.

Moe's speech therapist at school sent an email the other day. She's noticing change in him as well:

Moe is much more observant this year! He is really watching and interested in speech activities. Last year it took much more effort to keep him engaged. This year he is focused and engaged in activities.
I am modeling the words (CVCV reduplicated words such as "mama, dada" and animal sounds "baa-baa, moo-moo") and using cued speech to exaggerate the consonant sounds. During this activity, Moe watches intently. Sometimes he smiles, and he uses a contact point to touch each card. On a few occasions, he has mouthed the consonant.
During snack, Moe picks up his desired food, then is asked to locate the correct matching icon from a field of 3 (receptive task). For highly desired food items, Moe is doing well choosing the correct picture regardless of placement. For less preferred food (even if he chooses it initially), he tends to choose the picture on the left. Again he understands the process of choosing the picture, placing it on the strip, handing it, and touching each picture.
Playful sound imitation. Moe has attempted to imitate "ball, more" during the last month.
Various speech activities (such as songs, books, and toys that go with the theme) - Moe is watching the activities, and uses gaze shifting between the materials and me. He is watching modeled words, and touches items when asked and given a modeled prompt.
Non-verbal imitation - Moe requires initial hand-over-hand, then can sustain the motor movement for a few turns.

To an outside observer, Moe still doesn't talk. But if you look at the details, there are changes. He's starting to understand the picture exchange system a bit better. He seems to enjoy attending to the activities, and may even try to imitate, rather than just tune out. Moe's development - what we can see, anyway - may not happen in leaps and bounds, but it does seem to be happening, one step at a time.

Sandwiched?

2011-10-14T13:06:00.001-07:00

I’ve been lucky to have avoided the issues plaguing some of my friends in this sandwich generation of ours. In the past year, two of my good friends have had their fathers pass away, and one of them is now managing her mother’s care, from housing and finances to dialysis and medical appointments. This friend also has a two year old.

But like I said, I’ve been lucky...

To read the rest of this post, follow me over to Hopeful Parents, where I write on the 14th of every month.

Learning to See

2011-10-10T16:50:00.000-07:00

When Moe was diagnosed with autism, I lost him for a while. All I could see was "AUTISM," flashing as a neon sign in bright blinking letters. Although I was repeatedly told Moe is the same kid today as he was before his diagnosis, something had shifted. It has taken a long time for me to learn that what shifted was in me, not in Moe.

In the memoir, Seeing Ezra, author Kerry Cohen reveals the complicated and bumpy process many parents go through upon learning their child is not developing typically. Most of us, upon receiving a diagnosis, immediately jump into early intervention, as we should. But our options are often limited, dictated by standardized assessements that always lead to the same type of ABA and speech therapy, and school districts that may or may not have truly appropriate placements. Beyond those traditional therapies are a host of other options, many unproven, some potentially harmful, and all expensive.

As we dive in to these therapies, wanting only the best for our kids, we spend a lot of time trying to cure and change and forget to learn and accept. What I loved most about Seeing Ezra is Cohen's attitude about Ezra himself. She is uncomfortable from the start with the notion of trying to "fix" her little boy, and the idea that there is only a limited number of years to help him grow.

A lot feel those same hazy pressures that I do: We must do everything we can to make our children normal, to do something fast during the compressed 'window of opportunity.' A lot, like me, want to ignore this notion that there is a brief window in which our children can be helped, but we are afraid to. We're afraid our instincts might be wrong. We're afraid that we really are failing our children if we don't follow the path handed to us, one where all autistic children must participate in forty hours of behavioral therapy every week, receive chelation, and be made into something other than who they are.

Over time, I've started to learn what Cohen shows us so well in this book. We can only do so much. The therapies we choose to try with our kids have to fit in to our lifestyle as well. Our children will continue to grow and develop, even after their fifth birthdays. Don't panic. Move forward. Trust yourself. Grow together.

For me, this shift in attitude happens in little bursts. My language has changed as I talk about Moe, and I don't spend as much time wishing for an autism-free version of him, one that will never exist. Like Cohen, I have unhappy days or times when I blame or feel sorry for myself. But I am learning that "my unhappiness is my own. It isn't his. It isn't his."

If your child is newly diagnosed, reading this book isn't a shortcut to acceptance. We all need to go through the process ourselves. But reading Cohen's words can help you feel better, less alone, understood.

Cohen's story isn't one of miracles. It is one of daily battles, of a failing marriage and a of loss of identity. Like all of us, one day she is full of hope and optimism, the next day despair and questioning. Ezra makes great progress over the years, but continues to have big challeges as well, including a very limited diet. Mostly, this is a story of Cohen learning to remove the neon autism sign and once again see her son Ezra, and in doing so, help the rest of us see him - and our own children - too.

Steve

2011-10-07T17:41:00.001-07:00

I've worked or lived in Silicon Valley for 15 years. I did not know Steve Jobs, though I did see him walking in downtown Palo Alto once or twice. Some of my friends knew him quite well, having worked for Steve in the early days of Apple or Next.

Jeff worked at Apple for a few years. He was one of the first people on the iPhone team, working on a critical piece of technology. (You know, the phone piece.) I'll never forget the day Jeff called me and said "I just had a meeting with Steve." I was completely unfazed, thinking he was talking about some random Steve on his team. Jeff had made it clear that he wasn't happy with the way things were going at Apple. Mr. Jobs himself called Jeff to his office to ask him to stay. He did, for a while anyway.

Steve was the worst kind of manager. People at Apple work ridiculous hours. They burn out. The internal politics at Apple are notorious, and Steve had his hand in every decision, from big strategies to small details that no CEO should be involved in. It's not a great long term strategy.

But Steve was also the best kind of leader. He inspired with his vision, and by keeping such a firm control over the details of his products, he made his vision a reality. That is the tough part, by the way: making things happen. He made the hard decisions, even if they were unpopular, and that meant Apple actually shipped products. And people believed in him, so they worked the hours, and gave up control. It wouldn't work anywhere else, but it worked at Apple.

Steve's passing has touched so many in the autism community. The iPad has given many children a voice, a new way to communicate and learn. The device and apps are affordable, the touch screen makes sense to our visual and tactile learners, and best of all, it is cool to carry around, unlike the expensive, bulky augmentative communication devices kids and adults had to carry around before.

But still, why do we feel so personally about this loss? In part, because our devices are personal. We carry them in our pockets. We hold them all day, polish the screens on our sleeves. We make them ours, with the apps that we use to work, play, organize, communicate and connect.

But would we feel this way about the founder of Motorola or Android? Do you even know the founder of Android? (I do, but I happened to have worked for him.) Jeff was talking last night about the magic that computers held when we were kids. We grew up on the Apple II and felt the world change with the introduction of the Mac. I imagine it was like our great grandparents seeing the first cars, or our parents getting their first TV, a whole new world in front of them. That magic came to us from Steve, and so we feel a loss not just of a man, but of a piece of our childhoods as well.

So goodbye, Steve Jobs. We carry your spirit in our hearts and your imagination in the palm of our hands.

Yay! It's my SITS day!

2011-10-05T23:30:00.000-07:00

Last year, I discovered a group called The SITS Girls. True to their mission of supporting bloggers, they formed some tribes (hello, Spring Chickens!) to help us connect with like-minded bloggers. I found my first real connections on the web through that tribe. And today, I hope to make some more connections, since it is my day to be The SITS Girls featured blogger!

If you are new to this blog, I'd like to welcome you and introduce you to Moe.

Moe is my four year old son. He has autism, and he is the primary inspiration for this blog.
Moe doesn't talk. But sometimes he signs.

Oh, to have been in the room
when this school photo was taken.

I write a lot about the joys and challenges that Moe and his disability bring to our lives. But I write about a lot of other things as well: Moe's two year old sister, Jelly; books I've read; trying to sell our house; and whatever else is ~~driving me crazy~~ inspiring me at the moment. When I grow up I want to be a writer, so next month I'll be participating in NaNoWriMo. Anyone care to join me?

If you're visiting for the first time, leave a comment! I'd love to know more about you and check out your blog too. To learn more about my family's story, click on the "Peanut Gallery" tab above, or read some of my favorite posts, listed below. Thanks for sharing this day with me!

Dreams of a Parallel Universe: One of my favorites ever, it holds a little surprise.
Forever Linked: Post inspired by events that changed me, and the world, forever.
Fish For Sale: Anybody looking for a new pet?

Thanks again to the talented and beautiful ladies over at The SITS Girls, a community of over 10,000 women dedicated to supporting each other, and who are featuring me today! They are also the creators of Bloggy Boot Camp, my first blogging conference.

Guest Post: Getting Dinner on the Table

2011-10-04T06:00:00.000-07:00

I don't actually know any of these people.

One of my most stressful times of the day is that hour between 4-5pm, when the kids are antsy, I'm running out of steam, and I have to start thinking about dinner for the family.

Meet Karyn, my college roommate, BFF, and with the launch of Happy Eating Noises, fellow blogger! Karyn's blog is full of tips and recipes, but this isn't just another food blog. Her goal is to help anyone "learn to love cooking."

Karyn has twin boys so she's no stranger to a busy schedule. I asked her for her top tips for getting dinner on the table fast.

Before I had kids, cooking felt luxurious. I would dig intoa complicated recipe because I didn’t care if dinner hit the table at 6:00pm or8:00pm. My husband and I could manage our hunger and were willing to wait forthe delicious result of a long recipe. Now, it is a rare treat to find myselfwith hours in the kitchen. Having twins changed the pace of my cooking, as wellas the requirements. Now, six years into cooking for kids I have a structurethat works. I focus on meals that are at least one of these three things:

Make ahead

This is my favorite category. Nowthat my kids go to school full day (can we give a quick cheer for first grade?)I can make time to prepare dinner before they come home. So far this schoolyear I have cooked VegetableStrata, “Meaty”Vegetarian Chili, ParmesanChicken Strips and RoastVegetable Pasta during the day to serve that or the following night. Thesetypes of meals can typically be heated and on the table in under 15 minutes.

Quick

You have probably seen lists of45, 30 or even 15 minute meals. These are wonderful choices for feeding kidsbecause you can react quickly when they get hungry and have dinner on the tablebefore a meltdown ensues. Some of my favorites in this category are variousstir fries using frozenbrown rice, sautéed vegetable quesadillas and breakfast for dinner.

Kids cook

This is a tough one for manyparents and I get it. I want my boys to learn to cook because I think it is alife skill and one of my greatest joys. However, letting them help meansopening up a well of patience that is sometimes dry by 5:00 at night. I have tobe ready for the preparation to go slowly, be a mess and end up wrong. So I amchoosy with how and when the kids help. The reward when they can help is a big increasein their patience and flexibility about what they will eat.

Hopefully as we gain cooking experience and confidence, wecan incorporate more of these three types of meals into our repertoire. If allelse fails, you can eat microwave bean and cheese burritos with salsa and frozenedamame. This is our go-to, last-minute dinner. It is nutritious, delicious andon the table in under five minutes. Perfect for those days when dinner just isnot happening.

The Soundtrack of Your Life

2011-10-02T18:10:00.000-07:00

What is the soundtrack of your life?

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

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

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

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

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

X Marks the Spot

2011-09-29T13:31:00.000-07:00

X marks the spot where the For Sale sign stands on the lawn.

X marks the spot where we painted the dining room bright green. Then repainted a much better green.

X marks the spot where we put up wainscoting in the nursery, even though we were still calling it the "spare room."

X marks the spot where we carried you through the front door, followed by your sister two years later.

X marks the spots where you nursed on the couch, napped in the swing, bounced in the jumperoo.

X marks the spots where you formed your first smile, ate your first foods, took your first steps.

X marks the corner in your room where you bury yourself in your books.

X marks the spot where you played with the incrediblock for 45 minutes straight.

X marks the spot where I cried tears of joy at your first words, then of sadness when those words no longer came.

X marks the spot where you spent the 800 hours of therapy that we all hated and still aren't sure did any good.

X marks the spot on the lawn where you ran and splashed in the water, squealing with pure joy.

X marks the spots of so much laughter and tears, heartache and wonder, questions and hope.

X marks the spot where you crashed into the wall, resulting in stitches, but where you still run flying by.

X marks the moments of your life, held close in these walls.

And now, X marks an empty spot, waiting for us to sign our names.

But do not worry. I have a bag full of X's to bring with us.

Is My House Telling Me Something?

2011-09-27T11:56:00.000-07:00

As I've mentioned, our house is on the market. We've lived here for just over six years. That doesn't seem like a very long time, but in many ways it has felt like a lifetime. Since moving in Jeff and I got married, had two kids, and started down our autism road.

For a couple of those years, I really wanted to move. Our house is not big, and when Moe's 25 hour a week ABA program was in full swing, I felt cramped. When Moe was working with a therapist, Jelly, the dog and I had to find other space to be in. I was unhappy with the situation and I projected that on to the house. I wanted more space, yes, but it doesn't take a psychotherapist to see that I also wanted a fresh start.

The day after this happened, a potential buyer
wanted to see the house. I warned the realtor that
the branch had fallen, and she said her client wasn't
much of a "tree person."

But now, the house is starting to feel bigger again. Part of this may have to do with the fact that a lot of our things, including some furniture and many boxes of toys, are in storage or in the garage. Moe is also in school for most of the day. Jelly is in preschool two mornings a week, and as she gets older, her time at home during the day will also decrease.

Most days, I'm also more at peace with Moe's diagnosis, and as a result, with our life as a family. That helps put everything in a better light. I'm also not looking forward to packing or finding another place to live, possibly two, if we have to rent for a while before we find a new place.

There are still reasons to move. I cook and bake and I'd love a bigger kitchen. I'd like a comfortable guest room where the grandparents can stay. A playroom that I can make completely (okay, almost completely) Moe-proof and more conducive to teaching would be amazing. We could spend some money and turn our house into this, but it doesn't make financial sense to do that in our current neighborhood.

And lately, I've been thinking our house is trying to tell us something. Like the way the wall jumped out and attacked Moe. Before that, half of one of our lovely dwarf pear trees, the only tress that provide any shade in our yard, fell.

The only problem is I can't tell if it is telling us to stay or pushing us out.

An Unsavory New Habit

2011-09-26T15:21:00.000-07:00

Moe has developed a new habit. He's been spitting. He doesn't spit at anything or anyone. He just spits on his fingers, then wipes it off on whatever is nearby including his shirt, the wall, the window or the sofa. Yuck.

I'm not sure exactly when it started, but it has been at least a month. I think it started around the time he started school this year. The good news is Moe doesn't seem to be biting or chewing as much (though he still puts everything in his mouth), so it seems this fun new behavior has replaced the old fun behavior. At least a little bit. For now. You know how these things go.

I've started meeting a few moms for breakfast occasionally, and we discovered last week that this habit seems to be going around. A number of the kids have been spitting. They've also all been screaming the same high pitched scream. We all think it is our kid who started these lovely behaviors. But I'm pretty sure it was Moe. At least it's some form of imitation. Who says our kids aren't paying attention?

The spitting is definitely a sensory seeking behavior, though I'm not sure yet if it is the oral or tactile input, or both, that Moe likes. I also haven't been able to track yet if it happens more during certain times of day or activities. Our OT suggested giving similar tactile input, like finger painting or playing with shaving cream, to see if that helps.

I'm considering trying the brushing protocol again to see if that helps. We already incorporate oral input into Moe's sensory diet, like giving chewy and crunchy foods and giving smoothies through a straw. Does anyone else have any experience with this? I'd love to hear what has worked for you.

Dub-ya

2011-09-21T22:42:00.000-07:00

I use pseudonyms for my kids on this blog. It felt like the right thing to do, but sometimes I don't like it. You see, I love my kids' names.

Moe's real name starts with a W. He was named after my brother, William. We Jews generally don't name people after someone who is living, and usually do name our kids after someone who has died. Many choose to use the first letter of the name to honor the person. We thought about William but I just couldn't bring myself to call my child Bill or Billy, the names my brother went by. So we went with another W name. As it turns out, William seems to be popular again, though most Williams I've met seem to go by either Will or Liam.

I can't really argue with this.

We were thankful that our first child turned out to be a boy. The W names for girls were less appealing than the one we chose for Moe. I already have a cousin Wendy, and although Willa and Willow had potential, our last name is Bush. So Willow Bush was probably not the best option. (Some of my other favorite non-W girl names, like Rose, Olive and Lily were similarly off the table.)

Our last name has posed another challenge as well. In case you haven't pieced this together yet, my son is W Bush. Yes, like the former president. And I am, to put it gently, not a fan. I have one friend who likes to bring up the fact that my son is W Bush. But this friend moved to Texas, thereby waiving all his rights to tease me about the W.

Besides, Moe's middle name starts with the letter D.

For Democrat.

No More Stitches

2011-09-21T09:00:00.000-07:00

After Moe's stitches were in, the ER doc assured me that Moe would be fine, but understood "it must be hard when you can't really explain what was going on." I told him that maybe in this case it was a little easier, since he didn't know it would hurt so he wasn't scared in anticipation. The stitches weren't any worse for it and the waiting process was so much easier.

Getting the stitches out was the same. We had our regular pediatrician take them out. I was nervous with the anticipation of how it was going to go. But Moe was in a great mood. He was excited that I picked him up early from school. He was excited that he got to be with both Jeff and I without his annoying little sister taking away our attention. He had no reason to be concerned.

And in this case, neither did I. The process was fast and easy. Moe sat on Jeff's lap and held his arms still with one hand and his head with the other. Although Moe wasn't thrilled with having his head held still, he didn't put up much of a fuss and he let the doctor get close with those sharp scissors. At the end, she even remarked how impressed she was with how well he did and with his eye contact. He is usually a pretty happy kid.

Because things were going so well, and because we were there, (and are mean, mean parents), we decided to go ahead and give him a flu shot too. Lucky kid. He didn't cry at the shot, but he did give us a quite a look. He may not have words, but his eyes gave us a sharp "now that was just uncalled for."

A Visit to the ER (Part 2)

2011-09-16T08:47:00.000-07:00

We do what we can to protect our children. We vaccinate. (Or not. Let's not go there today.) We keep sharp knives off the counter and we cover the electrical outlets. But as I found out on Wednesday, kids find a way to injure themselves anyway.

To continue with our story, we got to the emergency room at a small, local hospital that we had never been to before. As emergency rooms go, it wasn't too bad. Jeff pointed out, "no bullet proof glass!" But all ER visits require the one thing Moe hates to do: wait. But wait we did, first in the waiting room, then in our little curtained-off cubicle.

I was pretty calm while we were waiting. It helped that Moe was no longer bleeding, and that the triage nurse put some gauze over his cut so I wasn't staring at ~~my failure as mother~~ it. It was about this time that I realized that we had left the house in such a hurry that I neglected to get either a shirt or shoes for Moe. It was cold in the waiting room, but he didn't seem to mind.

When we were taken back to the area with the beds, I got really nervous. Fortunately, we had at least another 30 minutes of waiting for that to wear off.

The doctor finally came in. He was young and very nice, and he confirmed that Moe would need three or four stitches. We told him that Moe was autistic so wouldn't be able to understand his directions. The doctor was incredibly kind to us and Moe. I was concerned that Moe wouldn't be able to stay still for the stitches. It turns out that most four year olds won't stay still for stitches, and he knew just what to do.

They started by putting a topical anesthesia on the area. Then we had to wait 20-30 minutes. We gave Moe a snack and changed his diaper. Moe played with my iPhone. I reversed the camera and showed him how to take pictures of himself. (Side note: why did I never think to show him that before?)

About 45 minutes later, the doctor and RN (an awesome guy with a hilarious southern accent that I can only describe, with apologies, as "redneck") came back with their tray of medieval torture devices. We swaddled Moe in a sheet, something we do in OT for calming. He was okay. Jeff held Moe's torso. The RN held his head still. And the doctor started with the Lidocaine injections.

The first shot wasn't too bad. Moe cried a bit, but it didn't seem horrible. But the second shot, which seemed a bit more directly into the wound, hurt. Moe screamed something like I've never heard from him before. I felt it physically. Even though I knew I it was necessary, that sound has stayed with me. And Moe never stopped crying - hard - through the whole process, from two more Lidocaine shots, to cleaning out the cut with water, to three stitches.

Despite the Lidocaine, I swear Moe could feel that first stitch going in. The doctor said he didn't think so. After the painful shots, I'm sure Moe was scared, didn't like his head being held so tightly. Coincidentally, one of my BFF's kids had the exact same injury when he was little, and she also said he didn't recover during the process.

As you can see, the cut is 2 feet long and
required 117 stitches.

As soon as they were done, and Jeff picked him up, Moe was completely fine. No more tears at all. But I haven't quite recovered. I can still see his hands covered in blood and a gaping wound on his head. I can still hear his scream from that shot, and see the fear in his eyes as that first stitch went in. In the scheme of things, this was minor. How do parents watch their kids suffer through worse? I hope I never know.

Also, I'm not looking forward next week, when Moe gets his stitches removed.

It is, however, strangely nice to write about this. Moe's autism had very little to do with what happened or how the process went. Through all the waiting, he was so well behaved in the ER. He hasn't been messing with his stitches, and he's letting me put antibiotic ointment on it. I wish it had never happened, but sometimes it is nice to have typical parenting stuff to talk about.

That reminds me: I must ask our realtor to make sure our next house has padded walls.

A Visit to the ER (Part 1)

2011-09-15T09:26:00.000-07:00

Yesterday started off like any other day. I was excited because my BFF and her two boys were coming over for dinner. I made pizza dough in the morning, Jelly and I had the first day of the new session of music class, and things seemed under control. Oh, how wrong I was.

A little after 4:00, Jelly was watching Sesame Street and Moe was doing what he always does when the TV is on: watches a bit, runs down to his room, plays a bit, and comes back. He doesn't sit still for long. If he's out of my sight for too long, and I can't hear what he's doing, I check on him, and often will find him in some precarious spot like the top of his toy bin or standing on his dresser.

He's also a little bit clumsy. I'm sure this is because of his motor delays and nothing to do with my athletic prowess. It isn't unusual for him to trip occasionally as he runs down the hall. So yesterday, when Moe tripped in the living room, I barely even looked up. He wasn't on top of a bookshelf or swivel chair; he was maybe ten feet away from me. But Moe never cries when he falls. He always just gets back up. He cries when he's hungry or frustrated, but like many kids on the spectrum, he seems to have a very high pain tolerance or experience pain differently than you and I. So when he didn't get up from the ground, had his head buried in his hands, and started crying, I went to him.

And when I picked up his head, all I saw was blood. I ran to get a clean towel, and see what was going on. It wasn't his teeth or eyes, but a pretty deep cut on his forehead. I was worried at first that he actually landed on something, but that didn't seem to be the case, so I just held him and applied direct pressure.

Jelly was aware of what was going on, but since she doesn't understand blood yet, she wasn't too freaked out. The dog, ever sensitive to the slightest increase in stress in the room, immediately started barking. She always knows how to make a difficult situation just a little bit harder.

At that point, I was a little stumped. I didn't want to just put the kids in the car and run to the ER, since I felt like I needed to keep applying pressure to the wound. (At what point does a cut qualify as a wound?) After a minute, I ran for the phone, called Jeff and told him to come home. I also called my BFF, who was supposed to be coming in another half hour or so, to come right away.

Then I waited, holding Moe and the towel. After about 10 minutes, Moe did not want to sit still. He was not amused at the towel I still insisted on holding to his head, and kept trying to go to the table for a snack. Both Jeff and the BFF called, but between Moe's crying and the dog barking, I couldn't hear a thing. All I could say was "just come here." She arrived in about 15 minutes, and Jeff was right behind her. Apparently, he made some daring traffic moves right in front of a cop, but fortunately did not get pulled over.

By the time we got in the car, Moe had stopped bleeding, but it was pretty clear he was going to need stitches. He now has three of them. That story tomorrow...

Citizens of the Online World

2011-09-14T11:35:00.000-07:00

I recently got involved in a discussion about vaccines on a local moms group mailing list. It turned ugly (as they always do), but it got me thinking about our responsibilities as citizens, not just of the real world, but of the online world as well.

Read about it today over at Hopeful Parents, where I contribute on the 14th of every month.

Our First Target Meltdown

2011-09-12T09:36:00.000-07:00

As you know, I have one typical child, as well as one with special needs. Watching Jelly, my typical two year old, gives us interesting insight into what a standard developmental path looks like. Although I do think this firsthand knowledge would have been helpful before Moe came along, because he is so delayed, they are sometimes quite similar, especially in terms of emotional development.

But they are also quite different. So many things come easy to Jelly, especially in terms of her motor development. When she wants her body to do something, for the most part she can just do it. Moe has to work really hard even to make a fist for a fist bump. He's only recently become fairly proficient at taking off his shoes, and can't put them on himself, where Jelly has been able to take shoes off and on for many months.

The biggest difference is their language development. Jelly has always been slightly ahead of the curve verbally, easily speaking in full sentences, and is working on concepts like when to use "ing" (as in Mommy is typing), and prepositions (in, on, behind, etc.). She practices these, speaking in sentences, and adjusting when they don't sound right to her. I'm not teaching her these things; she just picks them up. It's how most of us learn language, and it's fascinating.

You might think that this makes Jelly a much easier child to raise. Certainly her ability to say what she wants is very helpful. But Jelly is only two, so although she can talk, she isn't yet rational. Nor does she have patience. Very small issues or delays can turn into major tears, although she is getting better with concepts like "first, then" (as in, first we change your diaper then you can watch Dora).

I read often about the epic meltdowns of our autistic kids, often in sensory overloaded, and very public, places like Target. I've been lucky (excuse me while I go knock on some wood) that Moe is generally very well behaved when we're out and, as a sensory seeker, usually loves to be in bright, noisy environments. But I was still quite surprised that Jelly was the one who indoctrinated me into the Target meltdown club. My membership card should be arriving any day.

I was with Jeff and Moe, and the trigger was some perceived injustice around a hat that Moe had and Jelly didn't. She whined and complained for a while. When Moe was finally done with the hat, Jelly got to hold it for a bit. But I wasn't planning to buy it, so when we were done paying for the rest of our things, I gave the hat back. That was the last straw, and Jelly lost it. She was riding in the cart, otherwise I'm sure she would have thrown herself on the floor in perfect tantrum form.

It was also just about lunch time, and I'm sure that didn't help, but we couldn't go home because some people were coming to see it. So we decided a quick lunch was in order. We wanted fast, so we stopped at Carl's Jr. on the way home, thinking some fries and smoothies would help. Bad idea. This was the slowest fast food place ever. It took about 20 minutes from the time we ordered for them to bring our food. They weren't busy, nor was the food any better for taking that long. Moe and Jelly whined, cried, and/or screamed the entire time. It sucked.

The only saving grace was that Jeff was there. If I had gotten home and explained how Jelly had this horrible meltdown in Target, he would have sympathetically said "that's too bad" then moved on. At least he got to experience this particular hell right along with me. Lucky guy.

Understanding the Rules of Civility

2011-09-08T15:11:00.000-07:00

"She had changed into high heels and a tangerine-colored blouse

that clashed with all her best intentions."

I love witty writing.

I love smart female characters.

I especially love smart female characters who are a little bit sassy and a little bit ahead of their time. They make me want to be witty and sassy and a little bit ahead of my time.

Katy Kontent is that character. Rules of Civility is that book. And I got to read it for the BlogHer book club!

Read my review for Rules Of Civility on BlogHer today. Then go read the book!

Endings and Beginnings

2011-09-06T20:40:00.000-07:00

I had about an hour and a half of time to myself today. With both kids in school two mornings a week, I haven't quite figured out how to plan my free time. I have a to-do list, of course, but for various reasons, can't get them done. The place where I get my hair cut doesn't open early enough for me to fit in a visit before I pick up Jelly. The oral surgeon (ugh) only does consultations in the afternoons. I "forgot" to bring my gym bag. You get the idea.

The number one item on my list, however, is always "write new blog post." So today I went to my favorite writing spot, a local coffee house with free WiFi, ample power outlets, and a college town feel that makes me feel like a real writer.

But I'm not actually in a college town. So when I walked in today, I found a few of the usual suspects along with many, many new moms and their babies. I sat down anyway, tried to write a little, but found myself distracted. It wasn't the noise; lord knows I can write through almost anything. I was distracted by the memories of my own first mom's group meetings four years ago, Moe asleep in his car seat, me still learning how to hold a latte in one hand a push a stroller with the other.

How can it possibly be four years ago that I was one of them? How is it that so much and so little time has passed? Four years goes by in a heartbeat, and yet in this particular four years, my world has changed completely. Part of the change was just having kids, that life-changing jump from "me" to "mommy." But in the early days, Moe was just like all of those other babies. And I was just like all of those other moms.

What is even harder to believe is that we have now had as much time with Moe since his autism diagnosis as we did before it. And every day, that divide between before and after, between me and those new moms, grows bigger. My worldview has shifted. I am deeply and fundamentally changed, both stronger and more fragile, sometimes sadder, but often more hopeful than ever before.

They say one ending starts another beginning. Moe's diagnosis put him on a new path, ending his "normal childhood" and filling his days with early intervention and special education. But it also gave us answers and started us on a path toward healing. The diagnosis put me on new path too. I am a special needs parent. I am a blogger. I am a member of a new community of parents, helping each other out one day at a time.

And I've gotten really good at juggling a latte in one hand a stroller in the other.

This post inspired by the prompt "Where did it all begin?" at Kick in the Blog.

Crazy

2011-09-05T08:53:00.000-07:00

Jelly, now just over two years old, has become a little parrot, repeating everything I say. While I'm amazed at her pronunciation, this can be annoying, worrisome (possible echolalia?), entertaining, and a little dangerous. If I ask her a question, and she doesn't know the answer right away, she will simply repeat the question.

"Jelly, where's Moe's monkey?"
"Where's Moe's monkey?"
"I'm asking you. Where did you put the monkey?"
"Where did you put the monkey?"

It's the toddler version of "Who's on First?"

Although neither Jeff nor I are especially big swearers, certain words do come out of our mouths that we'd rather our two year old didn't repeat. While it may be cute to hear Jelly say "Oh my goodness! So messy!" I'm a little less comfortable hearing her say "Berkeley, be quiet!" or "Moe, stop it!" When I got home from BlogHer, I had a temporary tattoo from the Aiming Low party, that said "Internets. Hell Yea!" For some reason I read this out loud, and Jelly immediately repeated it. And while my first thought was "quick, go get the video camera!" the mom in me quickly repeated "Oh yeah!" and successfully changed her tune.

Last weekend, the four of us went to the Hiller Aviation Museum. This is a pretty cool place for kids, and Jelly wanted to explore everything. One of the exhibits is the cockpit of a plane in which an attempted hijacking had been thwarted. I held Jelly up to see in inside and silently read the story.

Jeff was only mildly interested so I gave him the quick summary of what happened. The hijacker was suffering from black lung disease and was mentally ill, but I insensitively just said "he was crazy." Oops. Since then, Jelly has been saying "that's crazy!" I tried changing her to "that's silly" but this time, I was too late.

Fortunately, she didn't realize I was talking about a person, and seemed to think I was describing the airplane. So now, any time she hears or sees an airplane, she immediately shouts "that's crazy!" In this case, I think my choice of words worked out okay. I can't imagine a two year old shouting "that's mentally ill!" every time she sees an airplane.

Where's my juice box? I thought this was first class.

Trusting Your Gut and Solving Behavior Problems

2011-09-03T08:49:00.000-07:00

Last week, Moe had a few rough days at school. I attributed this to a rough transition back to school. He's been tired from the long day and had a couple of sleepless nights. He can get really grumpy when he's tired and people try to make him work. And school, although fun, is also a lot of work.

Moe's wonderful teacher from last year read my blog post about his recent aggression, and reminded me that something probably set him off. One comment on that post suggested we request a Functional Behavior Assessment (FBA). Since it was only the second week of school, and because it had only been two rough days, I didn't think that was appropriate yet. But it was a good reminder that there are tools to help us learn more. We don't ever have to just shrug our shoulders and hope it goes away.

An FBA, for those who aren't familiar, is a structured observation of the behavior over time. We start with the ABCs of behavior:

Antecedent: what happened before the behavior began?
Behavior: the behavior itself
Consequence: what consequence did the behavior have?

For example, Moe pulled a child's hair. His teacher said that they had a long circle time and Moe was probably frustrated with having to sit still for that long. So the antecedent may have been a long circle time. The behavior was pulling a child's hair. The consequence was Moe got pulled into time out.

But if we looked at this over time, we might learn something different. In the above example, Moe was sitting at the end of the circle. We might find that Moe is more likely to get frustrated when it takes longer to sing goodbye to him, so we can adjust the antecedent to put him at the beginning of the circle, thus avoiding the behavior. Or we might find that the issue is only when he sits next to a particular child. Maybe that child makes a noise that bothers Moe, or he touches Moe, so simply separating them solves the problem. Or maybe the pulling has nothing to do with the other kids, but is a sensory need, so providing a therapy band on the chair (a trick our OT just taught us) or using a lap pad could help provide input if he does get frustrated.

We can also adjust the consequence to make sure an undesirable behavior isn't inadvertently reinforcing the behavior.We might find that Moe is pulling hair to get attention. Obviously we can't ignore an aggressive behavior, but we can be stoic in the way we respond. Or maybe Moe just wants to be out of the circle, and he does it so he can go to time out. By sending Moe to time out, we'd actually be encouraging Moe to pull hair again, since he got to leave circle time, exactly what he wanted.

In Moe's case, I had another thought. As I was writing a note to his teacher about some other things, I had a realization. Moe's lunchbox has been coming back almost full every day. He comes home and devours the entire contents. When Moe is hungry, he is very grumpy, and without words to express "feed me, dammit!" he gets very frustrated. We ran into this last year when I realized that our weekend meal schedule was about a half hour off from the school schedule. Simply adjusting our schedule at home made things much better.

I asked about this. Did Moe seem like he didn't want to eat at school? Or, since snacks are highly structured and they work on making requests, asking for more or help and sharing, perhaps they were asking too much of him at snack time? Bingo. His teacher said that Moe often takes a long time to make requests so snack time is over before he's eaten much. She said lunch is more about nutrition, and they aren't as demanding. But I know Moe needs those snacks throughout the day to keep him going.

I told her that Moe gets very frustrated when he's hungry, and asked that they figure out a way to make sure he eats more during the day. Because he loves to eat, snack time is a great time to work with him, but if he's not eating at all, that's a problem. Maybe they need to dial back the demands until he's better at it. (They are going to start using pictures of his food to help with choice-making, something he is good at.) Or maybe they ask for 5 spontaneous requests, but then give him free access. Or maybe give him bigger portions at each request. These are all small adjustments that could lead not only to reduced negative behaviors, but also to more successful learning at snack time, and a happier child who will be more receptive to learning throughout the remainder of the day.

Yesterday, his teacher reported that he ate better and he had a much better day. I hope it continues.

Learn more about Functional Behavior Assessments and how they can help you and your child. You can also use the concepts behind an FBA to solve behavior problems at home by charting the ABCs of your child's behaviors.

Talented

2011-09-02T09:29:00.000-07:00

I've always wanted to be really talented at something. Outside of the stick figures required for a good game of Pictionary, I am a terrible artist. I am a very bad singer, never had much skill at dancing, and quit playing the flute as soon as I could. I am good at things like interior design and am improving as a writer, but am I truly talented? I don't think so.

Many people on the autism spectrum have amazing talents. These are sometimes referred to as "splinter skills," but this is a term many people, including me, are uncomfortable with. It puts a true skill into a negative light. If someone is unable to dress himself but he can hear any piece of music and sit down and play it, why does the first trait take anything away from the second? In fact, these talents are often a pathway to learning other skills.

I think I have finally learned (mostly) to stop comparing Moe to other typical kids. I don't constantly think how things would be different "if." But I am by nature a competitive person, so I've (unwillingly) started comparing Moe to other autistic kids. That kid can play guitar at age 5! That kid has a photographic memory! This two year old can read!

But Moe doesn't seem to have any extraordinary talents yet. He is a very musically-inclined kid. He loves to hum and sing melodies, and he is in tune, but I attribute that more to the early music classes I did with Moe, starting when he was just a baby. Their philosophy is that all children are inherently musical and can learn basic music competence (singing in tune and keeping a rhythm). We're always singing in our house.

I find myself getting jealous of other kids who have these outstanding talents. How wonderful for their parents, who can say, "he can't talk, but just look at these paintings he created. He's so talented!" You don't have to tell me I'm being ridiculous. I know this is, in part, just parental competitiveness. We all want our kids to shine, and we have to check our own motivations (toddler beauty pageants, anyone?).

But I'm also always looking for a way in with Moe, a path to connection and shared experience. I don't care what it is. If he loves snakes, or rats, or bugs, I'll learn everything I can about them. Of course, a love of mid-century modern design would be preferable. And later, fine food and wine would be perfect.

I have to be careful with Jelly too. As my typical child, I need to be sure not to put too many expectations on her just to fulfill my need to see her in a dance recital. Though that would be really cute.

I hope to encourage both of my kids to try many different things. Because although some talents seem to be inherent, others can be developed with hard work over time.

Hands are Not For Pulling Hair

2011-08-30T17:53:00.000-07:00

I found a parking space in the lot at school this afternoon, which meant I could get out and wait for Moe with the other moms Jelly likes to get out of the car too. She is perhaps a little too comfortable at Moe's school now, so I am constantly trying to keep her close to me and out of the way of the many parents and kids filing out of school.

This is not the kid whose hair Moe pulled.
But he's just as angelic looking as this girl.

Moe's class came out but I didn't see Moe. One of the classroom aides said he was still in the room and would be out in a minute with his teacher, Ms J. I figured she was changing his diaper or putting his shoes back on for the umpteenth time.

When they finally came out, she said "it was a rough day today." She then told me that Moe pulled a classmate's hair (the cutest, littlest boy's adorable red curly hair). Apparently, he's been getting more and more aggressive in class.

My hunch is that Moe is having a tough time adjusting going back to the full school day. He's been tired, and like me, when he's tired, he's on a short fuse. When Moe is frustrated, he needs that deep pressure input to calm down. So he bites or grabs or pulls. It used to be that he would bite a chewy or a toy if it was available. Then he started sometimes going after the closest adult, especially if that adult was the one causing the frustration. He's never gone after other kids before.

But a couple of days ago, Moe hit Jelly. He didn't punch her or anything, just kind of played the drums on the top of her head for a second. It surprised her, but nothing more. We didn't think much of it, as it wasn't even directed at her specifically; she just happened to be in the way. But now it sounds like other kids have also been at the receiving end. Today, Ms J said they did a slightly longer circle time and Moe was probably tired and wanted to go home. "If only we could give him the words," she said.

I'm trying not to overreact. On days like this, I start to feel that I keep losing more of my sweet, fun, happy, go-with-the-flow little boy and that nothing we are doing is bringing him back. I know that he is growing and changing. I know lots of little kids can be aggressive. I can even tell myself that frustration is good - it means Moe has an opinion about how he wants things and might even get motivated enough to use some words. But this type of behavior is scary, and the only thing I can think right now is "I don't want this."

Last month, we were approved by the regional center for some one on one behavioral therapy services. I got in touch with the provider today and scheduled our intake appointment for later this month. I am thankful for this help, although 12 hours a month doesn't seem like much. I have such a huge list of things I want to work on, from adaptive (self-help) skills and toileting, to safety concerns and aggression. I don't even know where to start.

What is so frustrating about Moe's autism is that I never know what is coming next, but there is always something. The issues just seem to pile one on top of the other. In addition to the aggression, we're dealing with spitting, screaming (a high pitched blood-curdling screech that I'm sure has caused me permanent hearing loss), putting everything in his mouth (including leaves and flowers when we're outside), as well as the constant taking off of shoes, and the things we've had for a while like running off, taking off his diaper, stealing food, and generally getting into everything. That's not to mention the "regular" autism stuff: issues with regulation, inconsistent sleep patterns, lack of speech and communication, and fine and gross motor delays.

We came home from school, and Moe crashed on the couch, all giggles and smiles. Jelly is currently chasing him around the house, imitating everything he does, and shouting "come one Moe!" and he doesn't seem to mind. I hope tomorrow is a better day, but for now I'm soaking in this little bit of happiness. I might need the reserves later.

Life Imitates Reality TV

2011-08-29T15:46:00.000-07:00

When Jeff and I got engaged, I watched a lot of reality wedding shows. When I was pregnant, I couldn't get enough of TLC's A Baby Story. When we bought our house, I found an endless supply of decorating and landscaping shows. Though to be honest, my design show obsession really started when I was working at Microsoft on TV products and would record an endless supply of Ultimate Kitchens with host Tori Ritchie. I loved Trading Spaces (the early years with Genevieve, Vern and Ty) and Designer's Challenge. Fun fact: that show was hosted by Chris Harrison, now host of The Bachelor.

And now? I'm watching House Hunters.

Yes, we've finally decided to sell our house. I do love our little house, especially now that it is clean and clutter-free, but it is small. I'd like a bigger kitchen so that two people can actually work at the same time. I'd like to have a separate family room or playroom so that I can have a mostly toy-free living room to relax in. I'd like to have a bedroom big enough for Jeff and I to have separate dressers. I'm cramped with just 4 drawers!

Our current house almost fits the bill. The backyard is beautiful. The kitchen could be opened up. A second story master suite could be added. We've thought about it. I've designed it in my head. But although we like our neighborhood quite a bit, and got incredibly lucky that we are in a great school district for Moe, I want to be able to walk places. I'd like to be closer to one of the many adorable downtowns in the Bay Area. I want to be able to walk to a park with Jelly, and if I can stop on the way for coffee, even better.

It's a good time to buy. Interest rates are low, and although prices are still high, the market is not as competitive as it was a few years ago. When we were looking, it was standard practice to give an offer at least $100,000 over asking price. Offers were accepted on a single day, and any offer with a contingency would be laughed at. We had bid on eight other houses over the course of a year before we found this one. We moved in just a month before our wedding.

Because it's a buyers market, it's not a great time to sell. But our first open house had a lot of traffic and we're on this week's broker tour. Besides, I've watched a lot of Curb Appeal and Designed to Sell, so I'm pretty sure we have this in the bag.

Old Ski Boots

2011-08-26T16:14:00.001-07:00

His old ski boots traveled with me for many years.
Yesterday I donated them.
He would have wanted someone to use them.
Still, I cried.

This week’s assignment was to to write a story as a tweet - just one hundred and forty characters.

Rise and Shine

2011-08-24T19:54:00.000-07:00

Last Thursday, I should have written an R post. I didn't.

Last Thursday, I was at the memorial service for the friend that inspired my Q post, Queen Bee.

But this week, we must carry on with our lives. It is how we honor those we've lost. And it is necessary for those that live. And so today, I will cover both last week's R and this week's S.

That's right, dear readers, rise and shine, we're going back to school!

It's been a big week for us. Moe started back at our school district's autism preschool program. He is in the same classroom, but with a new teacher. There are no new kids in his class, and our favorite aide is back, so there is some consistency there. Moe is doing okay with the transition back. His summer program was just a half day, so it will take a little while for him to readjust to the longer day. He is tired at the end of the day, not always a bad thing.

Moe's new teacher seems nice, but she is young. He bit her on the second day of class. Last year, this news would have crushed me. This year, both Jeff and I had the same reaction: she needs to learn to be faster.

On Tuesday, Jelly started her nursery school program! I was very brave and didn't cry. She didn't either. Jelly loves talking about her new teacher and I think she is going to have a great time at school. She carries her new owl lunchbox around with pride.

Getting two kids up and ready for school can be a challenge. I'm learning to pack lunches and get backpacks ready in the evening. Fortunately, Jeff takes one kid to school and I take the other. And the hectic morning is so worth it. Having some time to myself two mornings a week is going to be heavenly.

Vaccines In Schools

2011-08-22T20:57:00.000-07:00

Today was the first day of school, and it seems a fitting time to continue writing about childhood vaccinations. Many people believe that your child has to be vaccinated to go to school. They are certainly supposed to be. However, parents can get exemptions for their kids. The process for doing this varies from state to state, but here in California, a parent only needs to complete a Personal Belief Exemption (PBE) form.

It is necessary to allow these PBEs. There are children who are medically fragile or who have a history of serious reactions to vaccines, including dangerously high fevers or seizures. Certain religious groups may be opposed to vaccination. All of these children should have the right to go to school. However - and this is a big however - unvaccinated children should be the rare exception.

In my mind, that means just a few kids each year. But we can put a real number on this. From a public health perspective, we need to maintain high enough levels of immunity in the population so that diseases cannot spread. This is often called "herd immunity."

The concept of herd immunity is important to understand. A large percentage of a population needs to be inoculated against contagious diseases to keep those diseases from spreading. This ensures that those who do not have immunity are less likely to come in contact with someone who has the disease. The herd immunity rate is different for each disease, but range from 80-95%.

There is a wide variance in the herd immunity, even for a single disease. The actual level of immunity needed will vary depending on the specifics of the outbreak, including the effectiveness of the vaccines and closeness of the social network. A classroom would be a very close social network. Have you ever experienced a lice outbreak? It can spread pretty fast, and that requires actual physical contact. Ever see a cold go through a class? Last year, one cold took out half of Moe's class in one week. Imagine if that cold were measles or polio; it would be devastating.

The CA Department of Public Health publishes the vaccination rates for kindergarten classes in California. I looked at the 2010 rates of PBEs. At Moe's school, 5% of kids in kindergarten have exemptions. That's pretty good. An outbreak of most diseases would likely be contained quickly. This was the highest number of PBEs in all of our district.

The district we'd like to move to, however, has one school with a 16% PBE. That means only 84% of kids in kindergarten at that school are fully vaccinated. That is dangerously low. A major outbreak could definitely occur.

A few other schools in neighboring districts had similarly frightening rates of exemptions:

McAuliffe School: 12%
Leroy Anderson Elementary: 22%
Simonds Elementary: 30%

But even more interesting are the private schools:

Casa di Mir Montessori: 20%
German International School: 36%
Waldorf School Los Altos: 76%

Yes, you read that right. Seventy-six percent of kids in the Waldorf School of Los Altos are NOT vaccinated. I realize that this is (unofficially) part of the Waldorf philosophy, but this number was still shocking to me.

What is most interesting to me about these numbers is that many of the schools with the lowest rates of vaccination are at the schools with well educated parents who think they are doing the right thing for their children. They think they are enlightened because they question "big pharma" (who, by the way, only makes 1.5% of their profits from vaccines). They "trust their instincts" about vaccines, believing that so many vaccines must overwhelm their little babies' immune systems. But most parents can't possibly have an instinct about this. They aren't trained to evaluate risk. It is why we have science, and the evidence overwhelmingly tells us vaccines are safe.

Q: If everyone else is vaccinated, why does it matter if I don't vaccinate my child?
A: First, your child could come into contact with someone else who has the disease. It only takes one. Second, each child matters. If a class has twenty kids, it only takes 3 unvaccinated kids to drop below herd immunity levels. But be aware, even if your school has a 95% vaccination rate, that means at least 5% of the kids are at risk, but probably more. Herd immunity levels may contain a major outbreak, but any unvaccinated child could still get sick. Third, you are not just putting your child at risk. Your child could infect someone else, including a child too young to have received the vaccine.

Q: If vaccines aren't 100% effective, why should I put my child at risk for the possible side effects of the vaccines if he isn't going to be protected anyway?
A: Vaccines are not a guarantee against the disease. Yes, a child can get a vaccine and still get the disease, but it is much less likely. Even so, when most people are vaccinated, any given person is much less likely to come in contact with someone else who could infect him.

The risk of the vaccines themselves are very low. For example, according to the CDC, a person who gets measles faces the following risks:

Pneumonia: 6 in 100
Encephalitis: 1 in 1,000
Death: 2 in 1,000

But the risk of major side effect of the MMR vaccine (encephalitis or severe allergic reaction) is literally one in a million.

Q: We use other ways to fight disease, like healthy eating, exercise, and dietary supplements. Isn't that enough?
A healthy lifestyle is important. I don't want to underestimate that. A strong immune system helps fight off or lessen the effects of many diseases, especially common colds and flus. But as one person in my mom's group said, "when measles comes around the Burger King eating, obese, never sees the daylight, TV-addicted, vaccinated kid will NOT get it and your kids WILL. It is a biological fact."

Please, please, please vaccinate your children. It is the right thing to do.

Autism, Vaccines, and Parental Advice

2011-08-16T18:09:00.000-07:00

I am on a number of mailing lists for parents of special needs kids. Recently, the following question was posed on two of these lists. (I cleaned the language up a bit, since I think the author probably isn't a native English speaker).

Hi, I am kind of confused with wich vaccines to avoid for my 18 year old baby. I know one is the MMR but what about the DPT, flus shots, HIB, and Hepatitis? I have a 3-year-old diagnosed with autism that have all his vaccinations up to date and I don't feel comfortable doing the same thing with my younger baby that is presenting a mild speech delay already. Also, I am concerned if I don't vaccinate my son, what kind of precautions should I take so they don't get sick?

Questions like this break my heart. This mom is clearly scared, but also so confused by the mass of information and misinformation out there about the autism-vaccine connection.

I was the first to respond. I usually do respond to these. I make my point known then stop because it is too aggravating to debate in this kind of forum. Here was my response:

This is a tricky question, and you'll get different answers from different people. It is a debate that, sadly, divides the autism community. My perspective is that you should not skip any vaccinations. There is no scientific evidence of an autism-vaccine link. There is, however, a link between increasing rates of diseases like whooping cough and measles because of reduced rates of vaccination. If you choose not to vaccinate your child, you are putting your child, and other children, at risk for those diseases.

This sparked some lively debate, which was, for the most part respectful and completely unhelpful since she got all of the possible answers, from "don't skip any" to "delay some" to "skip them all." There were, however, a few responses I want to address.

First:

No flu shots here either.....My NT [neurotypical] daughter at the age of 8 got H1N1 and I didn't even know it was the flu. She had a slight fever and bad cough...but, went to school (oops) for 2 days before I thought she was sick enough to go to the Dr. Got tested and it was positive! I felt bad...but, no one else got it (her best friend, her twin brother with autism, the rest of the family, etc). That proved to me that the FLU shots were certainly not needed.

To which I responded:

It's great that your daughter had a mild case of the H1N1 flu. Indeed, for many, it turned out to be quite a mild strain. Unfortunately, some people did die from the H1N1 flu (and other flu strains every year). One family's experience (positive, negative, or neutral) does not prove anything about how another will react.

I want to respectfully put forth another opinion. I am a firm believer, especially with things like whooping cough, measles and other potentially deadly childhood illnesses, that we have a public health responsibility to vaccinate our children. Evidence, not fear, should guide our decisions.

Yes there are absolutely valid exceptions, but those cases are rare and certainly should not be the rule.

She then responded:

Understood but although selfish, my responsibility is to my kids not the public. But I certainly respects others opinions. If my kids get one of those illnesses, I take full responsibility. It is a chance I am comfortable taking.

Excuse me? This may be a chance you are comfortable taking for your own children, but if you don't vaccinate your kids, you are also taking that chance with my kids. Are you going to take responsibility if one of them gets sick - or dies - because you chose not to vaccinate? And how exactly would you do that?
I also got the following response:

I'm a mom who has seen some pretty dark years with autism. I would have traded measles for autism in a heartbeat.

How horrible! Is she really saying that she'd rather risk her child dying? Does she also let her child drive in the car without a seat belt? I doubt it. It is so easy to say we'd take one risk over another because most people don't understand how to assess risk, and we haven't grown up seeing our friends and neighbors suffer from these diseases. And why is that? Because we have vaccines! I remember going to work with my dad and meeting another doctor who was disabled because he had polio as a child. Our parents remember these diseases, and we all got vaccinated. In one generation these diseases all but disappeared in this country. I'm afraid it is going to take some pretty bad outbreaks of these diseases before some people get the picture.

I think Shannon De Roches Rosa, one of the founders of Thinking Person's Guide to Autism, said it best as part of this same discussion:

I'm concerned about any recommendation to delay vaccines, even an empathetic recommendation based in a complex understanding of vaccine and autism issues plus autism parents' fears, reality, and concerns. Worried parents (and those who oppose vaccination) will likely interpret such recommendations as evidence of a vaccine-autism connection, when no such connection has ever been made -- despite the enormous amount of autism research diverted in that direction over the past decade.

Delaying vaccines will leave your child vulnerable to diseases that are on the upswing. And, having just listened to my mother's best friend's story of her daughter being stricken by measles encephalitis at age 5, lying comatose for months, and her parents being told that she'd never recover (unlike Roald Dahl's daughter Olivia, she did); and having had conversations with parents whose children have recently died from whooping cough, it's important to remember that most of us don't have the context of living with vaccine-communicable disease that used to give immunization the urgency it deserves.

Later this week, I'll be writing about rates of immunizations in schools. Sneak preview: it isn't pretty.

BlogHer Wrap-Up Part II: Special Needs Mini-Conference

2011-08-14T14:19:00.001-07:00

When Moe was first diagnosed, I did not want to go to parent groups or seek out support. I didn’t want to hear their stories. I didn’t want to be forced to imagine a future other than the one where Moe is just fine.

I have wonderful friends, who, while they may not always “get” what it means to have a special needs child, certainly get me. But most of my day to day socializing was with a moms group I joined when Moe was a baby. They are wonderful mothers, but because of Moe’s therapy schedule, and his delays, I could no longer do what they were doing.

I was stuck between a community I no longer fit in and one I didn’t want to be in.

Then I found blogs. And I started commenting. I wrote my own blog, and got comments there. I hopped on Twitter, and I found a community. And I liked it.

Fast forward to last Friday, August 5, 2011. This virtual community in which I had at first reluctantly, then avidly, become involved, came together at BlogHer. And now I am no longer satisfied with having just an online community.

Imagine how it felt to sit at lunch with Ellen, writer of Love That Max, and fierce advocate for ending the use of the “R-word.” Imagine how it felt to get a hug from Laura Shumaker, and hear her say “it gets easier.” Imagine how it felt to meet Liz Ditz, Jennifer Byde Meyers and Shannon Des Roches Rosa, founders of Thinking Person’s Guide to Autism. Imagine how inspiring it was to hear Robert Rummel-Hudson speak about his daughter, Schuyler, and disability rights. Imagine what it is like to meet the funny and beautiful Julia Roberts, founder of Support for Special Needs, and this conference’s fearless leader.

It was also nice when people were excited to meet me! Like when Caryn (Living with Logan) accosted me in the lunch line. I was thrilled.

I think my tweet during the conference sums it up: “Do you know what it is like to be in a room of people who truly know you, though you’ve never met before? I do.” It is empowering, comforting, inspiring, and emotional. It feels right.

I met so many wonderful people, too many to list here (though I will be updating my Resources page with many of their blogs). And having even this brief real life connection has now strengthened our online connections. We are already plotting and planning our next conference, and I hope I’ll be able to meet up with many of these wonderful people soon, since many of them live here in the Bay Area.

I’m not going to summarize the panel discussions from the conference. I’m sure other bloggers will do that (the link-up is here), and you can read the (somewhat confusing) transcript over at BlogHer’s Virtual Con. But I do want to include a few of the moments I found most inspiring and thought-provoking.

Shannon:

“I don't care what you think of my kid. My kid has every right to be here. He's not living up to anybody's expectations but his own. And if you can't see that, that's your problem….There's… a real kind of fear mongering about kids with special needs. Oh, my God. You have a kid with special needs would be the worst thing in the world and you have to lay down and die… I don't know how you people do it. How many of us hate our kids? We love our kids. The thing is having other people see that we don't just love our kids. We respect our kids. And we demand that other people respect our kids too. So just have the confidence to demand it.”

Robert:

When we talk about how much money goes into special education and goes into all the things that we need, people talk about that money, it makes me wonder, do people talk about the burden of bridges that don't collapse or on the burden…if your house catches on fire or if your community is hit by an earthquake? I talk about shifting the discussion of what our families and what our kids need to something besides…an economic budgetary issue.

Shannon:

All those people who have this problem, I bet you 90% of them went to public school. You went to school. You are the beneficiary. You are seriously going to take that away from the people who come behind you? School board meetings make me crazy.

Robert:

We can frame this whole discussion in terms of civil rights rather than in terms of entitlements or funding…These are the programs that when times are good, well, then we can afford them…Almost…luxuries and when times get rough, all of a sudden, our kids, their lives and the things that…give their lives power and meaning, they're on the table.

From the audience:

I wanted to comment on what Rob said about disability rights being the most important political movement of this century. It is. It is the most important political movement of the century because it strikes at the heart of our fascination with independence. It strikes at heart of our desire to be isolated, strong, powerful, self-reliant individuals and that's American dream, right? That you can make it on you own and all that. That's the so, when we're pointing out to people that our kids need services, which is, of course, what we do all the time as advocates…We're their worst nightmare. We have to make it less of a nightmare, which all of our blogs do…say we're all on this continuum capacity. I really don't like disability. I like capacity. We're all on a capacity continuum and we're all going to be disabled if we live long enough.

Inspired? Want to be part of a wonderful, supportive community? Do it. If you have a child with special needs, join us over at Support for Special Needs. If you need another kind of support, find it. It isn’t scary or depressing. I promise.

Thanks also to @MrsLaLa101, @elXcel, @DanaSearsFam, @littlebitquirk, @marfmom, @aureliacotta, and everyone else who danced the night away at BlogHer!

BlogHer Wrap Up (Part One)

2011-08-12T11:07:00.000-07:00

As most of you know, I was in San Diego last weekend, attending the BlogHer conference. It was my second blogging conference, but this one was much bigger. Over 3,600 people (primarily women) attended. It was incredibly well-run and organized. Those BlogHer people work hard.

The highlight of the conference was the Special Needs Mini-Conference (SNMC), and deserves a post all of its own. We will be doing a link-up on Support for Special Needs on Monday, so I'll save that post for then.

Call Me @wantapeanut

The conference environment is strange. You introduce yourself with your twitter handle. Popular bloggers are minor celebrities in this world, and you feel like you know them even though, of course, you only know what they've chosen to tell you on their blogs. If you recognize your favorite blogger, a difficult task given that the most you've probably ever seen of her is a very small, square, avatar, you might introduce yourself. Most of these bloggers are really nice and happy to have you tell them you appreciate their words.

There are some bloggers that you may have gotten to know a little better, either through commenting on each others' blogs or on twitter. I can't tell you how many of these conversations started off with "you're much shorter/taller than you seem in your picture." That is, of course, if you manage to find those bloggers, which happens someone randomly. Twitter, it turns out, is not a great way to find people in real-time, and if you don't have a phone number, you'll end up looking for someone sitting "at a table between the buffet and the coffee." Only they were there twenty minutes ago and aren't there now.

Sorry, I don't do product reviews

There is a hug expo hall where brands courting mommy bloggers (and vice versa) give away "swag." There is good stuff there and you could sign up for manicures and fake eyelashes. I didn't take much, though I did feel free to eat Dove ice cream at their booth. Yes, it was delicious (try the peanut butter).

The conference seems to have become about how to make money off your blog. I get it: people spend a lot of time blogging, and want to be compensated. We value the opinions of the bloggers we've come to know, and marketing research has shown that people trust the opinions of other bloggers more than many other sources. I wouldn't mind working for one of those companies running social media campaigns. But I don't plan to make money off my own blog in this way. (Book deals are welcome.)

For the same reason, I wasn't as interested in many of the sessions. Many people didn't even go to the sessions, preferring to explore the expo hall or attend sponsored private sessions and parties that surround the conference. These private sessions provide great opportunities to meet and talk in smaller groups, but also seem to scatter the conference a bit.

It's about the stories

The reason I blog, and the reason I went to the conference (outside of the SNMC) was to meet people and hear their stories. By far, my favorite times were those that featured great writing, including the Voices of the Year community keynote, and the Listen to Your Mother open-mic night. They stories filled me with tears and incredible laughter.

Queen Bee

2011-08-11T08:37:00.000-07:00

The phone buzzed and we flew to your side, in swarms of three and four until we completed our hive.

We flitted around you, busying ourselves with whatever work we could find.

Straightening sheets.

Talking to nurses.

Taking turns watching kids in the lobby.

"Isolate a honeybee from her sisters and she will soon die."

In a group whose constant buzzing often keeps us out too late, we had only a few words.

We're here.

We'll take care of your girls.

Goodbye.

We love you.

Goodbye.

This post was inspired by my visit to a friend who is losing her battle with cancer. During her fight, we have been wearing honeybee necklaces, and she took to calling our group "Heather's Hive."

The quote above is from the book The Queen Must Die: And Other Affairs of Bees and Men (Longgood) and was quoted in The Secret Life of Bees, by Sue Monk Kidd.

Wordless Wednesday: Our Next Great Blogger?

2011-08-10T09:46:00.000-07:00

Book Club Review: In Stitches

2011-08-08T17:00:00.000-07:00

Are you passionate about your job? Have you found your calling? Maybe you always knew you wanted to be a teacher or firefighter or songwriter. Or maybe you realized it later in life, after trying other things that just didn't feel right. Perhaps you were pushed into it, maybe even fought becoming an artist or poet because it wasn't practical, or didn't want to follow your dream to go to law school because you were afraid to fail. But then you found it, that role you were always meant to play. And it felt right.

Before I had children, I worked as a product manager for technology companies. I fell into it, working my way up from my first job in customer service and tech support. I had a great time and I was good at it. I met very smart people and even found a niche in user interface and interaction design. But I never considered it a calling, like I was meant to work on consumer electronics products. I miss working quite a bit, but it wasn't difficult for me to take a break from my particular line of work.

That's not to say I think being a stay at home mom was my calling. I love my children deeply, but never imagined that I'd be a stay at home parent for this long. I am grateful that I have been able to be here for Moe, be intensely involved in his therapies and get daily updates from his teachers. But I'm not ashamed to admit I want more.

But more of what, exactly? I honestly don't know. I think about all the specific knowledge I've learned as Moe's mom, and consider putting that knowledge to good use. But I don't want my entire life to be about autism. I am looking for something to do that uses another part of my brain. I want to solve different kinds of problems. But the specifics elude me.

It is a privileged problem to have. So many in our world do not have time to think about their calling. They do their jobs because they have to put food on the table and pay the mortgage. I am lucky my husband can do that for our family. Writing this blog is the closest I've come to finding something that I more than enjoy, that I feel compelled to do. I miss it when I don't write most every day. Too bad I'm not getting paid to do it.

This post was inspired by Anthony Youn's memoir, In Stitches, which gives readers a look into the training of a medical doctor who discovers his passion is plastic surgery. As a member of From Left to Write book club, I received a copy of this book for review. You can read other members posts inspired by the book on book club day, August 9, at From Left to Write.

Things I Learned at BlogHer 11

2011-08-07T21:24:00.001-07:00

I am back from the BlogHer conference in San Diego. I have a lot to do: business cards to sort through, notes to review, thoughts to process, and sleep to catch up on. I'll be writing more about the conference, as well as sharing a book club post, this week. But for now, here is a brief list of some things I learned at BlogHer.

Never wear new shoes to the first day of a conference, no matter how comfortable they seem out of the box.
Twitter is great for many things, but if you want to find someone in a crowd of 3600 people, get a phone number.
Everyone has a story to tell. Some will make you cry, but some will make you laugh so hard you can't catch your breath. We need both kinds.
I am not too old to party until 1 a.m. three nights in a row.
I am definitely too old to party until 1 a.m. three nights in a row.
I may still find use for my Sociology, Communications, and MBA degrees.
Online connections are important, but nothing compares to looking someone in the eyes and telling them "I understand."
Big things can start in a small room.

Thanks to all the wonderful people who made my first BlogHer so great! You know who you are.

Perfect

2011-08-04T12:53:00.000-07:00

"He's perfect," the pediatrician declared at Moe's first visit. He was only six or seven days old. She meant only that he had ten fingers and toes, was eating and growing, recovering from the act of being born.

I think back to that day. "Liar!" I want to yell. There was a bug in the program. A glitch. Someone put the blue wire into the red slot. He is broken. Fix him.

I gasp, ashamed. What kind of a mother thinks her son is anything other than perfect? I look at him. Perfect curls. Perfect little teeth all in a row. A perfect laugh. Possibly perfect pitch. Full of life and energy. He is everything he is meant to be.

I'm the one who is flawed. Anxious. Easily overwhelmed. Controlling. Unable to live in the moment. And perhaps a little too hard on myself.

Oh well. Nobody's perfect.

A Brief Update

2011-08-02T13:07:00.000-07:00

I've been busy. I haven't had time to write much, and though I'd love to post some pieces of great genius before I leave for the BlogHer conference in two days, it's not looking good. Here are some of the things I've been up to instead of updating my blog:

Taking Moe to the potty every 20 minutes.
Wiping pee off the floor in between aforementioned trips to the bathroom.
Preparing for BlogHer, the conference I'll be attending in San Diego this weekend. Figuring out what clothes, shoes and electronic devices to bring, let alone what sessions I'm attending, seems to be a full time job.
Spending a lot more time on Twitter. See #3 above.
Some other exciting things that I'm not ready to post about yet but that will be sure to both give me lots of blog fodder and completely suck up all of my time.

I'm looking forward to some great networking, learning and fun this weekend. I'll be a little out of my element, as I am really uncomfortable walking into large social situations where I don't know anyone. But I will know a few people, and am looking forward to connecting with the bloggers from From Left To Write and The Red Dress Club. I am really excited about attending the Special Needs Mini-Conference on Friday, where I'll have the chance to meet, hug, and probably cry a few tears with so many of the bloggers who inspire me on a daily basis.

One Down

2011-07-28T07:39:00.000-07:00

Yesterday was one of my most challenging days as a parent. I don't say this to be melodramatic or to ask for your sympathy. It is just a fact.

Moe has been taking off his diaper when he's home in the afternoons. A lot. Some of those times, his diaper is wet and I can tell he's just peed. Other times, he takes the diaper off then I find a little puddle somewhere. But he's also getting aggressive, kicking and scratching, when I try to put a diaper back on him. I don't know how to handle him when he's like that. So I decided it is time to start working on potty training. I devised a plan:

Take Moe to the potty every 30 minutes.
?
Profit

(Any South Park fans out there? Nothing? Let's move on.)

My plan was to take Moe to the potty every 30 minutes or any time he started to take his pants off. My hope was that if I could get him to go on the potty he wouldn't want to take off his diaper, and even if he did, he wouldn't make a mess in the house. Plus, we could start to build some positive associations with going on the toilet.

We started off strong. I sat Moe on the potty. He peed (we've done that before). He smiled, I cheered, and we were on our way. I set the timer for another 30 minutes. Twenty-nine minutes later Moe had his clothes off. His diaper was wet, but I put him on the potty anyway. He fought it, swiping at me and knocking my glasses off my face. So much for positive associations. So I took him off the toilet, but when I tried to put his diaper on, he put up a major fight. He grabbed at me. He pulled the dog's tail. I wrestled the diaper on him, got him dressed and put him in his crib to calm down.

You can guess what happened next. I skipped the next timer, which went off about 15 minutes later to find (obviously) a naked Moe, bed soaked. I took him out of his crib and pulled the wet sheets and blankets off. Moe was still naked but I wasn't too concerned because at this point he had peed at least three or four times in the last 45 minutes. I found him in the living room and - surprise! - he was peeing on the trampoline. I whisked him up and onto the potty, but, again, it was too late.

After giving Moe a quick bath, I got Jelly up from her "nap" (read: time singing and playing in her crib) and moved the party outside, potty and all. I let Moe be naked, hoping that I would be able to catch him when he started to pee, and quickly bring him to the potty. Easier said than done. Moe is a quick and stealthy pee-er. Splinter skill?

Two baths (Moe) and 17 Diet Cokes (me) later, feeling completely defeated, I called it quits and put Moe's back-zipper pajamas on. Moe did go on the potty a few times, but he also went on:

his bed
the floor
the trampoline
the couch
playhouse (outside)
flowers
fence
outside chair
everything else

Who pees this much? Should I be worried?

And that was our first day of potty training. One down, so many more to go.

If you've gone through this, I could use your wisdom. Helpful suggestions appreciated!

Wordless Wednesday: My Happy Place

2011-07-27T02:45:00.000-07:00

Ben Folds at the Warfield.
July 22, 2011

Snuggles and Snacks

2011-07-24T21:39:00.000-07:00

I'm sitting at the kitchen table with Moe. It is just after 10am. He is full of smiles as we are eating breakfast following a very rough night. Moe didn't fall asleep until 10pm, was up screaming and crying at 2:30, then again, just briefly at his usual wake-up time of 7:30.

The whole week has been like this, at one moment stressful and difficult, the next full of joy and connection. Moe has been trying hard to communicate with me, leading me places by hand (a behavior the speech consultant suggested we encourage) and even approximating some words: "hu" for hungry, and "wawawa" for what I think was an attempt at water. These attempts to communicate comes with frustration as well, as Moe struggles to tell me what he wants, but is unable to find the right way to tell me. Or, on occasion, I push him to try a bit harder or I just can't give him what he wants at that time.

We've had some success with Moe on the potty as well. He's been taking his diaper off over and over again. I think it is almost always just after he's gone. Friday afternoon, I put Moe in his pajamas (the ones with the back zipper that he can't take off) because I was getting so frustrated. But I am hopeful that this is an early sign of potty-readiness, and I've started putting him on the potty in the evenings before bed. He's gone enough times that I think he knows what you do there, though the understanding that you go there every time, and the ability to communicate that he needs to go (before it happens), are likely a long way off. Still, I'm encouraged.

Moe had a lot going on this week. He started a new school and got some vaccinations at his four year old well-check doctor's appointment on Friday. I have to imagine he has a lot to process and hope that his sleep will even out soon. When Moe is sleeping well, the rest usually follows.

There were some great moments this weekend, and it seems right to wrap up with those. Jeff and Jelly were both napping on Saturday afternoon so Moe and I had some time to ourselves. He started running up and down the hall, so I positioned myself at one end. When Moe ran toward me, I held my arms out and he reached right up to me (not something he would normally do). It was so cute. I spun him around and he loved it. He ran back down the hall and back to me again and again, until I just couldn't lift him anymore.

Saturday night, Jeff had brought home some Yogurtland goodness. It was around 9:30 and Moe was having a really hard time falling asleep. I could see him on the monitor, tossing and turning. We dimmed the lights and brought him to the living room. He sat next to me on the couch, and I offered him some frozen yogurt. He wouldn't take it at first, but after testing the frozen yogurt with his fingers (for some reason he doesn't trust me enough to just take anything I hand him on a spoon), decided that it was awesome. So he snuggled up to me and we shared the rest of the yogurt. He was mellow and sweet, and it was a really nice moment. After the yogurt was done, we put Moe back to bed and he fell asleep pretty quickly.

I get really frustrated when Moe can't fall asleep, but we've all had the occasional sleepless nights. When that happens to me, it often helps to get out of bed for a little bit. With Moe especially, I'm always analyzing and solving. Sometimes, it's hard for me to remember that my kids are human too, and may just need what any of us might need: a snuggle, a snack, or a change of scenery.

New School

2011-07-21T09:05:00.000-07:00

Moe started his new school this week. I suppose it is like summer camp, since he'll be returning to his regular school in four and a half weeks. Yes, I'm counting.

I was so nervous for the change. Sunday night Jeff asked what I was afraid of, "that he would get hit by a car?" Frankly, yes, that was one of my concerns. Moe is a runner, and no matter how many times you tell someone "he will take off, he needs a hand always," no one ever seems to get it right away. In fact, that first day as they were showing us where to put Moe's backpack, he darted off to explore the main office, which is connected to his classroom. I think they get it now.

I also wanted to know that Moe would be happy and that he would have fun. Would he like the snack they gave him? Would he know the songs? Would he be confused and frustrated having to learn a new system? It is hard to trust your little boy's care into the hands of people you don't know, no matter how kind or capable they may be.

I also really want him to make some progress. This is a private (read: not cheap) placement, associated with an autism center. It is also an inclusive program, meaning there may be typical kids in his class. Even though he'll only be there 5 weeks, their approach is slightly different from that of the school district program and I'm interested to see how he responds.

This class is only a three hours in the morning, compared to his regular six hour, full day program, so he is still getting a bit of a summer break. I am too since the class starts later in the morning, they provide a snack and I don't have to pack lunch. The downside is that afternoons are longer for me.

After three days, he appears to be doing well and participating in the activities. He seems to like the classroom, and they are willing to work with Moe on whatever skills or behaviors we want. I'm proud of how quickly Moe seems to be adapting, and perhaps even generalizing some of the skills he's learned in his regular school to this one. I was also happy to see a familiar face in the class, a little boy who will be in Moe's class in the fall.

Moe is exhibiting some behaviors at the new school we only see from him when he's in new or overwhelming environments, like looking up at the lights. When they reported this behavior two years ago at his first placement, I was so worried. Now I know that that is just his way of coping. I guess I've progressed a little bit too.

Written as part of Jenny Matlock's Alphabe-Thursday. Today was the letter N.

Before and After Weekend Project

2011-07-18T17:17:00.000-07:00

Raising a child, especially one with special needs, can be very rewarding. But sometimes it is very challenging. So sometimes you need to eat some chocolate. And sometimes you need to get together with your girlfriends and have a good laugh (or cry). And sometimes, you just need to redo your closet.

Before

During

Office Staging Area

Demolition

Painting

Make sure it's level!

Done!

After

Shoe glides, drawers for purses, baskets for sweaters

I even have a cool flip-flop hanger. Awesome!

I did the design, purchasing, painting and assembled the drawers and shoe glides. Jeff did the demolition, patched some very large holes in the walls, and hung all of the pieces and shelves. Isn't is awesome how I counted several trips to The Container Store as part of the "work" to get this done?

I love our new closet!

Love On Point

2011-07-15T09:07:00.000-07:00

In a Jewish wedding ceremony, the rings are placed on the right index finger. As with everything Jewish, we don't really know the reason why, and we can bicker about it all day. Uncertainty is in our genes. We get around this by giving a few possible reasons, then getting something to eat and forgetting about the question.

The rabbi at last weekend's wedding described two reasons for this custom. The first is that moving the ring from one finger to another is a deliberate act. So, the groom places the ring on the bride's index finger and she moves it to her ring finger, signifying her willingness to enter into this marriage. Think of it as the ancient equivalent to "check here to agree to the terms of service." In fact, there seems to be a lot of emphasis in the Jewish wedding ceremony on not getting tricked into marrying someone. The reason for this is (surprise!) up for debate, but often refers to the story of Rachel and Leah.

The other reason we place the ring on the right index finger is that Talmudic rabbis agreed that this finger had the most direct connection to the heart. Clearly the more romantic spin on the custom.

Parents of children with autism understand the significance of the index finger. Pointing, or rather the lack of pointing, is a primary marker of autism in young children. When Moe was first being screened our pediatrician asked if he pointed at things, and we answered "Maybe? Sometimes?" Now that we've watched our typical daughter, Jelly, enthusiastically point at everything since she was at least 9 months old, we know that our "I don't know" should have been an emphatic "no." For her, pointing was a developmental imperative, one she worked on as vehemently as rolling over, crawling, and walking.

Every couple of months, I come across a set of pictures from a party when Moe was about 18 months old. He had just started walking, the only delay I had been concerned about at the time. In the photo, Moe is clearly pointing at the camera. And though I can remember hardly any examples of "shared attention" or other efforts to point out things he was looking at (other than a short time when he would point to body parts, letters, or pictures in books when we asked), I always come back to this picture. It was my "proof" that he was okay.

In some ways, this picture makes me hopeful. If Moe had this instinct to point at one time, it must still be in there. The "it" I'm referring to is not the pointing; rather, "it" is the typical boy I still sometimes long for and imagine, though I will myself not to. Somehow, knowing that Moe was once doing typical things helps me feel like he can get there again. I convince myself I'm not asking him to be something he never was, but just to get back to the way things were.

On the other hand, the fact that I have exactly one picture, one memory, of Moe pointing, is a real indication of how early the signs of Moe's autism were present. Despite the regressive nature of his autism, at least as far as language development, there were many early signs. And this realization tells me how, for lack of a better word, "deep" his autism runs. Though Moe will learn many skills, perhaps even the skill called "how to grow up, get a job, move out and otherwise get along in society," he will always and forever be autistic.

And if Moe's index finger is, as the rabbis say, a direct connection to his heart, what does it mean that he still, at age 4, doesn't point? If Moe doesn't share his experience in this way, doesn't see the point (pun intended), does this mean that he does not share his heart?

Of course there are other ways to share experience and to express love. For one thing, parental love is about giving without expecting anything in return. And if, as we say, Moe's autistic brain is wired just a little differently than mine, then maybe other connections are as well. If Moe's finger isn't directly connected to his heart, I can certainly tell you that it is connected to mine. As my fingers point, sign, squeeze, brush, hold, direct (and re-direct), I share Moe's heart every day.

Besides, I'm pretty sure for Moe, the most direct connection to his heart is his smile. Unfortunately, it's hard to put a ring on that.

A Magnificent Flashback

2011-07-14T06:00:00.000-07:00

Because the summer break is almost half way over...
And because the summer program at Moe's school finishes on Friday and I'm nervous about starting at a new place for the rest of the summer...
And because I had a post due today over at Hopeful Parents and I didn't have time to write another one...

For today's Alphabe-Thursday post, I'm going to recycle a post from the very beginning of this school year, Moe's first year in preschool. Click on over to read The Magnificent Mrs. M.

My Cup Runneth Over

2011-07-12T07:41:00.000-07:00

Last weekend I went to LA for a wedding. I first knew the groom as the little brother of one of my best friends from Hebrew school and then high school. A few years later, he and my brother became very good friends. Now, more than 25 years later, our families are, well, like family.

My parents have come to adore this bride and groom, and since they are local, spend time with them at Dodger games and other events. My dad expressed that this wedding, and the people involved, are important to him. He and my mom had the honor of signing the ketubah (Jewish marriage contract).

The ceremony itself was on the helicopter pad of a hotel in Marina del Rey, with a glorious panoramic view of the city, from the ocean on one side, sweeping around through downtown and beyond. The bride and groom stood under a custom chuppah (canopy), made from pieces important to them, including a shirt my brother got on a cross-country trip they took together to the Baseball Hall of Fame. As the chuppah flapped in the wind, I caught glimpses of the words "Field of Dreams."

But this weekend wasn't just about the wedding and old friends. It was also about making new connections. On Saturday morning, I had breakfast with my blogging friend, Cheryl from Little Bit Quirky. The time flew as we chatted about our kids, about our plans for the upcoming BlogHer conference in San Diego, and about the future of our blogs. I'm looking forward to spending more time with Cheryl; I just hope she survives Carmageddon.

And then I met Kerry. Kerry is a frequent commenter on this blog, though not a blogger herself. She has a child right around Moe's age, who is also on the autism spectrum. Our kids are remarkably similar, and though we had never met before, we felt like kindred spirits. Kerry's husband was in the wedding, so I knew she'd be there early. She was by the door when we walked in, and we were inseparable from that moment. Kerry is a true warrior mama, kind and caring and fiercely determined to do everything she can for her son. We lamented the fact that we lived so far away, swore we'd find a way to get our kids together soon, and I know we'll be great friends always.

I also spent some time with my friend (the groom's sister) and her husband. She is very pregnant, and was given the day off from modified bed rest to attend the wedding. She had to take it easy (i.e. no dancing) so we had plenty of time to catch up. Yesterday she went into labor! I'm still waiting for word of the delivery. It's earlier than they had hoped, but still should be safe, and now I'll get to visit that little baby when I'm in San Diego in August!

I met or reconnected with a number of other wonderful people, friends of the groom's and of my brother's. I'm thankful that Facebook will allow me to keep in touch with them moving forward. The rabbi described the second cup of wine the bride and groom drink during the ceremony as the "cup of joy." Surely, my cup runneth over.

Looking Forward

2011-07-06T21:00:00.000-07:00

This weekend I'm going to a wedding. The wedding is in Los Angeles, and I'm traveling without my family. I'd be lying if I said I wasn't looking forward to a couple days away from parenting duties. The groom's sister is one of my oldest and closest friends, and because she is pregnant and must take things very easy, there should be ample time to talk. One of my blog readers who has a son very similar to Moe will be at the wedding too, and can't wait to meet her.

I am also going to have brunch with the very fantastic Cheryl who blogs at Little Bit Quirky!

Although I will have friends as well as my parents at the wedding, unfortunately Jeff won't be there. Because my parents will be at the wedding too, we didn't have a babysitter for the kids. The expense of travel and the stress of finding a babysitter who could handle a non-verbal, trouble-making, autistic child at an unfamiliar place, plus figuring out the various sleep requirements, seemed like a lot of effort for a short weekend visit. So we decided I would go myself.

One of my primary motivations for getting Moe to be able to sleep in a regular bed is so that we can travel, even just a little, and visit my parents more often. I'd like the kids to know their grandparents' house. I think a bed and a bed tent will work, but I want to experiment at home first.

So, yes, I'm looking forward to a couple of nights of not being woken up by whining or crying or squealing. I'm looking forward to seeing my friends, having a drink (or a few) with no responsibilities. I'm looking forward to a plane ride all by myself. I'm looking forward to some time without the kids. But I'm also looking forward to the day when I can bring them along.

Off His Axis

2011-07-05T13:18:00.000-07:00

Last week's stomach bug and the summer heat seem to have knocked Moe off his axis a little bit. Much to my dismay, Moe's sleep issues have returned, and he hasn't slept through the night since Friday. I hope this is short-lived but whenever I'm sleep deprived, I tend to think the worst. We'll never sleep a full night again!

You may remember that we stopped giving Moe melatonin a few months ago. He had been waking during the night and we wanted to try an experiment. As expected, Moe had more trouble falling asleep, but he was not waking during the night. We were all much more rested. But the last four nights, Moe has woken up in the middle of the night and been up for several hours. Our air conditioning's lackluster performance this summer certainly hasn't helped.

All last week and into this week has been full of ups and downs. Saturday we had a really nice lunch out, then went to Tap Plastics to buy some boxes for the 3D choice board. We are also (once again) rearranging things in the house to better make Moe's toys and books "in sight but out of reach." Moe can open most boxes and can climb really well, so Jeff was interested in trying to make some clear boxes that Moe can't open without help. We bought some cool pieces of acrylic remnants ($1 a piece!). They are still sitting in my car.

Sunday we went to the pool. Moe slept in so we went a little later that we usually do. We were excited because that meant that the mushroom would be on, and we had never played in it before. I thought Moe would love it. He didn't. He seemed a little afraid of it, and was actually quite anxious in the water, clinging tightly to me or Jeff. This is new and unusual behavior, and I'm not sure if it was caused by the sound of the mushroom, which streams quite a lot of water, or just his mood. Water can be overstimulating for him if he's tired or not feeling well. So he tolerated the pool for a while, but we didn't stay long.

Jelly, although also terrified of the mushroom, enjoyed the pool quite a bit and I had her sitting on the edge and jumping to me, as well as holding on to the side and kicking her legs. She's going to be a swimmer in no time!

We thought about going to the Monterey Bay Aquarium on Monday, but Moe, having been up much of the previous night, slept in quite late. We had a mellow day, but I found it a little depressing. I remember so many fun Fourth of July outings when I was growing up, including parties at our own house and block parties with relatives. Jeff reminds me that the kids are still very small, but I see the kinds of things my friends are doing and I know we just aren't there yet. I wish it didn't bother me, but it does.

We had a fantastic fireworks show from our back yard, however, and brought Moe (who wasn't sleeping anyway) out to see them. He seemed to really like them. Jelly, for once, fell asleep early and I was not about to wake her up, especially for something that might have been scary for her.

After we put Moe back to bed, I went into the front yard, where the view was even better. I caught glimpses of at least 3 or 4 fireworks shows from surrounding areas. I have no idea where they all came from. Next year, I think maybe we'll have a party at our house, and invite everyone out to the front lawn for the fireworks display. I'm realizing more and more that if it is too hard to go to things with the kids, we'll just have to have everyone over here.

Of course, next year may be a whole different story. Hope you all had a safe and fun holiday weekend!

The Right Words

2011-07-03T20:42:00.000-07:00

I slip on a yellow paper gown over my clothes, snap on purple gloves: the protocol in this hospital room.

My friend is there in the bed, her hair cut very short, to minimize what will be falling out. I chat with her husband. He gives me brief instructions before leaving: make sure she eats something. He has been running on empty for weeks.

The room is filled with pictures of family and friends. A hydrangea is on the table. I wish I had brought something pretty; last time we were not allowed. I add the tabloid magazines I brought to the stack already on the table.

On the wall, I notice a bio-hazard container. The warning shouts "Chemotherapy drugs. Incinerate! Incinerate!" This poison that they inject is too potent for the standard needle receptacle.

I sit in the chair. I don't know what to say. She pages the nurse for nausea and pain meds, but the nurses are slow. She pages again. Eventually the pills arrive. The nurse draws more blood.

I remove my gown and fetch a Popsicle. I fill a pitcher with water and ice.

We take a walk in a garden too beautiful to be in a hospital. She looks better when we're outside.

I give a brief tutorial on the iPad. I can be useful that way.

We tell stories of the past, of how we met our husbands. We talk about vacation plans for the summer. Neither of us have any, for entirely different reasons.

We run into an acquaintance who is there visiting her brother. Colon cancer, but it is spreading. I cannot remember her name, and I make an awkward introduction.

She is tired and we return to the room. I pause to put on another gown and gloves. She pages the nurse to reattach the IV. She asks for more pain meds; they will need to page the doctor.

I rub her back a bit. It is awkward with the gloves on. I arrange blankets as she settles in to sleep.

I take the gown and gloves off, text her husband that I am leaving. Give him the status of the pain meds. He'll be back for the overnight shift.

From the doorway I say goodbye. Promise to come back soon. I search for the right words.

Do they exist?

Working Out Our PECS

2011-07-01T15:53:00.000-07:00

On Wednesday, I dropped Jelly off at my BFF's house, and met Jeff and Moe up at Lucille Packard Children's Hospital. We were there for speech evaluation with a woman recommended by Dr. S, our developmental pediatrician. I was thankful we were at a satellite building of LPCH; I find it hard to walk through the hospital without having my heart break a little for all the sick children there. Even when I was arriving to deliver my own children, happy days both, I had to keep my eyes down.

I arrived first and filled out some paperwork. Jeff and Moe walked up and Moe, already holding Jeff's hand, reached up and grabbed mine with the other. He was apprehensive at the waiting room, despite the TV, toys and books. This hesitation is something new, and I think positive, showing a little more awareness and concern for where he is and what might happen. But Moe stayed calm, and we were shown back to a room.

The SLP we met is a specialist in augmentative communication, or communication without speech. She had already reviewed Moe's latest reports and IEP and knew his background. She worked with Moe in a few different ways, and we thought he did really well. A year ago, Moe would have spent much of the time trying to leave the room, grabbing us by the hand to open the door. This time, Moe sat at the table for the entire appointment, engaging with the SLP, making requests and taking turns when prompted.

Sorry, wrong kind of pecs

Most of the readers of this blog should be familiar with the Picture Exchange Communication System, or PECS. If you don't know about PECS, the concept is simple: instead of speaking a word to communicate something, a picture, often a graphical icon, is used. So if Moe wanted to play, he could grab the "play" icon and hand it to me. This can be done more simply to give choices; for example, at school he might be asked to point to one of two or three icons representing which song he wants to sing at circle time. In a more advanced form, multiple icons can be used to form sentences: the icons for "I want" and "eat" can be put together, for example.

The SLP used a different form of exchange with Moe, using 3-D models instead of icons. She had beads in a clear box and balls in another box. These were used as models. She then had another set of beads and a ball in her hand. She gave Moe the ball and let him play. She then said "my turn ball," pointed to the ball in the box, then held out her hand for Moe's ball. He handed it back. She did this with the beads as well, just to get him familiar with the two toys. Then she waited for Moe to make a choice. He had to point, unprompted, to the item in the box he wanted, then he would get the real thing. He understood the concept quickly and we added in more items to choose from. He started to tune out when there were 4 or more choices.

We then switched to pictures of the items, instead of the 3D versions in the boxes. Moe did okay with this, but not quite as well. He did better when the picture was held up at an angle, rather than flat on the table. We tried a few more variations with different types of equipment as well. Moe also did some nice verbal imitation playing with a microphone toy.

We haven't had a lot of success with PECS in the past. Although I know Moe understands the basic concept, we haven't gotten much past the pointing to a choice stage. We have had a little more success with sign language, but the motor planning required to make the signs is difficult for Moe. PECS has the benefit of being understood by anyone (the words are printed under the pictures), but can require carrying around a large PECS notebook. Signing is more portable, but not universally understood.

As part of our PRT work, we've also been phasing out signing with Moe in favor of verbal attempts and this seems to be working. Moe will almost always make a verbal attempt when prompted. This is not a verbal approximation; right now, any sound will do. But this week I am starting to require more of an approximation for a few words that have high value and are easy to say, like "up" and "open."

I was a little disappointed after the evaluation. Every time we meet with someone new, I'm so hopeful that this person will be the one to discover the key to Moe's speech. I want someone to be able to look at him and tell me, do X, Y, and Z and he'll start talking. I know it doesn't work that way, but I hope anyway. We are now able to come back to see this SLP, and it is nice to have another expert on the team.

The SLP did confirm apraxia of speech, meaning there are motor planning issues in addition to the issues of understanding social communication. This is not news, though I don't think has ever been in any kind of formal assessment before. She recommended we start with the 3D models, then move to photographs before using the graphical icons. We'll be spending the weekend getting set up for that. But primarily, she said to keep doing what we're doing. There is no easy answer here. Just time, hard work, and a lot of patience.

K is For: Are You Kidding Me?

2011-06-30T08:55:00.000-07:00

Moe was very tired last week. It seemed unusual but I just figured it was a combination of the very hot days and the change in routine with summer school. Even though the summer school day is earlier, any change (including a new teacher and new rules) can be a little stressful, and the longer afternoons mean we have been playing outside a lot, splashing in the wading pool, and trying to keep busy.

Still, Moe seemed a bit off. He hadn't been eating as much as he usually does, and without going into graphic details (your welcome), his diaper indicated perhaps a bit of a stomach ache. He was a little fussy over the weekend and at school on Monday, and his lunch box came back almost full. Moe puts everything in his mouth, tries to drink water out of the fountain in the backyard, and I was a little concerned he picked up something outside. But he didn't seem sick enough to have an infection, so we just carried on.

On Tuesday, Moe wasn't going to go to school and we were ready to go our penultimate meeting for the PRT research study up at Stanford. I had been stressed about this session because I didn't have childcare for Jelly, and had been juggling things around to make it work. But our new babysitter, who is starting with us next week, happened to be free that day. Moe actually ate a little breakfast, and was ready to go. Things were back on track.

The new babysitter arrived. She had met Jelly once before, but not Moe, who was sitting on the couch. She walked in the house, and just as I was saying "And this is Moe..." he threw up all over the couch.

All I could think was, "you have got to be kidding me."

Thankfully, the babysitter did not turn around and leave. She actually helped me with the cleanup and watched both kids while I rescheduled appointments, called the doctor, and ran to the grocery story for saltines and popsicles.

Moe seemed to be much better on Wednesday. We decided to go ahead with the speech evaluation we had scheduled with an SLP who specialized in augmentative communication. I already rescheduled this appointment once because Moe was sick, and wasn't going to wait another 2-3 months to get a new appointment. So we went...

Did Moe throw up all over this highly sought-after SLP?
Did I get the date of the appointment wrong?
Did Moe suddenly start talking on the way to the appointment?

Stay tuned to find out more!

Don't forget there's still time to enter my book giveaway! Just comment on my post about The Anti-Romantic Child.

The Anti-Romantic Child

2011-06-28T15:04:00.000-07:00

The Anti-Romantic Child: A Story of Unexpected Joy, by Priscilla Gilman, tells the story of Gilman's son Benjamin, who was diagnosed with hyperlexia, a condition related to, and often co-existant with, autism. Kids with hyperlexia, like Benj, are generally gifted, precocious, extraordinarily verbal and early readers, but they often have trouble with communication, comprehension, and social connection.

In many ways, Moe and Benj are opposites. Where Benj was a very early reader and talker, Moe is still, at age 4, almost completely non-verbal. Where Benj suffers from sometimes extreme anxiety, Moe handles new situations without fuss, seeming oblivious to expected changes in his behavior. And where Benj is bothered by over-stimulating sensory environments, Moe is a sensory seeker, craving hugs and squeezes, lights and sounds. Our kids are perhaps as different as any two kids, on or off the spectrum, could be.

Benj's mother and I are on the surface also very different. She was born and raised amongst academics and artists in New York City, while I am a Southern California valley girl. While both attended Yale, she studied Romantic poetry, and I was at the School of Management, business being perhaps the very definition of an unromantic pursuit. Yet we share the experience of being the parent of child with special needs, something that transcends our other differences. We share the same worries and fears about our kids being "different." We struggle with the same day to day challenges of new experiences, of wondering if we're doing the right things, of navigating the world of therapy and finding the right school placements. Our marriages strain under the many pressures of raising a special needs child. And many of us, like Gilman, are also raising a typical child.

Gilman uses poetry as a backdrop for her story, primarily quoting Wordsworth throughout the book. Although I found this challenging at times, there were moments when the words resonated with me. Gilman imagined a romantic and carefree childhood, much like her own, for her son. When that seemed as if it were not to be, and later when her father passed away, she felt "like a grownup, in a negative sense, for the first time." She looked back at her past, and how far she's traveled from those younger days, and noted "Two consciousnesses, conscious of myself/And of some other Being." (Wordsworth, Prelude, II.) I have often felt a great divide between who I was before I had Moe, and who I am now, sometimes not recognizing the latter.

Gilman also struggles with the idea that her son is so different from herself. At first, she believes that Benj is just like her husband, as I have believed often that Moe is just like Jeff. But as it became clearer that Benj was not just a bit quirky and precocious, she realized that she was "living with a very different child than I had been." Although no one can control the temperament of their children, we long to see some of ourselves in them, and this can be very difficult to find when your child is on the autism spectrum.

Gilman is a constant fighter and believer in Benj. Perhaps this is seen most poignantly in her search to find the right school placements for Benj, in the highly competitive New York City private school environment. She longs not just for a school that can manage his needs, but also for others to see him as she sees him, wanting people who "cared for and about his soul." She finds such a placement. Gilman is fortunate: so many of us are lucky just to find someplace that will keep are children safe, let alone teach them and love them.

What I appreciated most about this book was Gilman's honesty in her journey toward true acceptance of her son. It wasn't easy to realize that "this is and will be my life - this day-to-day work on and for and with Benj." She learned to reject the expectations society put on her, especially as an academic, and her son, to focus on appreciating and understanding Benj:

My goal as a mother is to never stop fighting that battle for Benj's essential self and to teach him how to fight it on his own behalf.

I've always struggled with poetry, despite my years of higher education. But Benj's story, his challenges and triumphs, carried me through. And I appreciated Gilman's love for poetry, using familiar words to carry her through difficult times and finding new meanings within those words. Like Gilman, I too find comfort in words. I find strength reading others' stories, in books and on blogs. But primarily, I find strength by writing my own words as Moe and I continue our journey together.

I have two copies of the book, The Anti-Romantic Child, to give away! Just leave a comment on what you use as sources of strength. Books? Movies? Music? This blog? I'll randomly select two winners on Friday.

I was given a copy of this book by the publisher, though all opinions are my own.

If you want to learn more about hyperlexia, I've been told this book is excellent: When Babies Read: A Practical Guide to Helping Young Children with Hyperlexia, Asperger Syndrome and High-Functioning Autism

A Big Girl Now

2011-06-26T21:11:00.000-07:00

When Moe was just an infant, I invented a game that I now play with both kids. Although Moe doesn't get into the game very much anymore, Jelly loves it. It is a silly way to get the kids not to fuss during diaper changes, especially at night when I'm getting them into their overnight diapers and pajamas.

There isn't much to the game. Once Jelly (or Moe) is naked on the changing table, I stop and very seriously say "Uh oh," followed by "I see a naked baby!" Then I tickle her saying "nakednakednakednakednakednakednaked." I'll sometimes embellish the game in a number of ways, usually by making the "uh oh" more serious, or drawing out the "naaaaked baaaaby." It cracks her up and she will often ask for "naked baby" as soon as she is on the changing table.

Our little ones grow up so fast, and with every passing day, it seems Jelly is less and less of a baby. She has an understanding of the world around her that is beyond her age. So the other day, we were playing the naked baby game and I asked Jelly if she was a baby or a big girl. I was so happy when she said "baby."

Jelly has been making big strides toward potty training. I've been introducing her to the potty, talking about it and having her sit on the potty, but otherwise not doing much about it. She's only 26 months old and many friends have told me that their biggest mistake with potty training was starting too early. Yesterday, she asked to "go potty" so I put her on it. She read a couple books, we hung out, but nothing happened. When she said she was "all done potty," we put the diaper back on and went back to playing, though I did notice she had a wet diaper a short time after.

Again today, Jelly asked to "go potty." I put her on the potty, and started reading her a book. Moe came in and we hung out. I wasn't paying much attention, but at one point checked the potty and she had gone! Hooray! We made a big deal of it, and though Jelly seemed to be confused at first why we were so excited, she smiled proudly. And when we made the transfer and flushed the "big potty," she had to follow all the same steps I use, close lid, close baby-proof latch, then flush. Clearly, she's been paying attention.

Today, when we were playing "naked baby" I asked Jelly if she was a baby or a big girl. She said "big girl." I'm not sure I'm ready for this.

Joking Around

2011-06-22T20:46:00.001-07:00

I don't know a lot of jokes, and when I try to tell one I usually end up either forgetting it or cracking myself up so much I can't get through the punchline. But I can be pretty goofy and have been known to, on occasion, deliver a great one-liner.

When Moe was diagnosed with autism, one of my biggest concerns was that he wouldn't understand me. Kids on the spectrum can be very literal and I am often sarcastic. I was concerned he wouldn't have a sense of humor, wouldn't "get" me. That he'd never lose himself so completely in laughter that he couldn't stop.

My most powerful memories are those times when I've lost myself in laughter: listening to my uncles tell stories around the Thanksgiving table; unable to catch my breath with my girlfriends, where each glance would cause a new wave of pee-in-your-pants hysteria; laughing with Jeff as we catch up in the evenings. Forget for a moment all my concerns about Moe's future independence, or friendships, or marriage. I wondered above all, would Moe have laughter?

While we're not exactly cracking jokes yet, I can definitely say Moe has laughter. Although he sometimes laughs a bit maniacally, with no apparent cause, other times his giggles are clearly genuine. He'll laugh at a certain song, or at an appropriate time in a book or TV show. He'll give you a mischievous smirk before doing something naughty. He, I believe, tries to be funny, and his laughter is the most beautiful sound on earth.

While it may be some time before we're messing up punchlines together, I'm certain Moe has a sense of humor. And since he's still in diapers, I don't even have to worry that he'll pee in his pants.

Wordless Wednesday

2011-06-22T06:00:00.000-07:00

Complete Joy

And Contentment

School is out and back in again

2011-06-20T14:25:00.000-07:00

The school year ended on a beautiful sunny day following a very rainy spring. Moe's teacher hugged and kissed us all good bye as we left for the break. I managed not to cry. We feel lucky we will see her again next semester!

Moe's first year of preschool flew by. Progress peeked through in small but noticeable ways.

As suddenly as the school year ended, the weather changed. Now it is 90 degrees. I'm folding sweatshirts and long sleeves from Moe's laundry, even as he's running around in shorts and a t-shirt.

Moe was off last week, his only real break for the summer. We spent the time outside, playing in the wading pool and running through sprinkler toys. He had a really good week, and was tired at the end of each day. We were all happy to get to sleep in a little, lounge in our pajamas each morning, with no hurry to pack a lunch or be anywhere on time. But by Sunday, we were ready to get back to a routine.

So today, Moe started the summer session. He is in the same classroom as he is during the year, with a new teacher (the same one from last summer) and a new aide. Thankfully, one aide, Ms. K, stays through the summer. We love her and I feel better seeing a familiar face.

I remember so clearly watching the moms of older kids last summer, the ones who knew the routine, knew where to park, knew each other. This year, I am one of those moms. I no longer let my inner fears betray my outer confidence. Not usually, anyway.

Pick up and drop off were chaos today. There is some kind of summer enrichment program at the school and they are using the same drop off point as special ed (usually we have a separate entrance). Someone blocked the school bus in the drop off circle, and now we can't use it. Many of the teachers are new, so they don't know which parents they are supposed to be looking for. Kids were late. I stepped in gum. Darn typical kids ruining it for the rest of us.

The new aide walked Moe back to his classroom. They were almost at the room when I saw Moe break free and start running. Ms. K and I laughed. She'll learn.

Father's Day

2011-06-19T10:21:00.000-07:00

We are busy this morning, sleeping in.
Eating waffles with berries and whipped cream.
Hanging out together.

So I'm not writing much of a father's day post. We'll do a wrap-up tomorrow. For now, I give you this:

and this:

Happy father's day to all of the wonderful dads out there!

House Husband

2011-06-18T08:35:00.000-07:00

Yesterday morning I had to go up to Stanford for the research study. Moe didn't come with me; they just needed me this time. Jeff stayed home with the kids.

I got up to an alarm. I took a shower. I got dressed. I poured coffee into a commuter mug (that I would actually commute with), and grabbed a bag that did not contain diapers, wipes, or sippy cups. I put NPR on the radio and drove by myself.

Why, yes, Lynn. This is exactly what I look like.

I felt a little bit of my old self. I was independent and competent. I loved it. I resolved again to figure out how to get myself back in the workforce.

When I cam home, the kids were sill in their pajamas. There was crayon on the walls. The dishwasher had not been emptied and dishes were piling up around the kitchen. The dog had not had her pill.

None of this, by the way, was Jeff's fault. Other than the crayon, things were just as I had left them. I realized again that my going back to work would not make these tasks go away.

Nor would it make Moe's therapy schedule go away, nor my need to be involved in those therapies. It would just make things more complicated, schedules more difficult to arrange, and add a lot more stress.

But for one morning, it was really fun having a house husband.

Image from http://www.123rf.com/

Beautiful Autism

2011-06-17T08:02:00.000-07:00

Moe is a beautiful child. I'm not saying this because I am his mother and I have to think he's perfect. He really is gorgeous.

He has light blue eyes.


Moe, 18 months

He has perfect curly hair.

To. Die. For.

He has a button nose, and rosy cheeks, and a perfect smile filled with perfect little white teeth.

I've heard it said many times that kids with autism tend to be unusually good looking. Moe's teacher said she's noticed in her many years of experience that her autistic students are almost always really beautiful. She noted "it's not fair," and I knew exactly what she meant.

Then again, isn't it fair? Since one of the primary markers of autism is difficulty with social interactions, wouldn't it be only fair to have a beautiful face, one that might draw people to you? Genetically this seems to make sense. Adults with autism (or shyness or other social anxieties) might find it difficult to meet people. But those who are good looking might have a better chance at attracting a mate, passing along both those beautiful features and their autistic ones. (This may also be why there are such high rates of autism in the Bay Area: all those smart engineers who are valued for their brains and higher earning potential. Those "geeky" traits might not be fully appreciated elsewhere.)

Did I mention I'm not a scientist?
Did I mention I married an engineer?

Moe's teachers are immediately drawn to him. He is a lovable kid, but he can be difficult, mischievous, and frustrating. He bites. He makes an enormous mess at snack time. He takes off his diaper. Jeff and I often find ourselves saying "it's a good thing you're cute." I know Moe's teachers and therapists would teach him with love and professionalism no matter what he looked like, but his adorable features do serve him well. You want to help him. You'll do almost anything to see him smile.

This isn't always a good thing. During Moe's intense year of ABA (behavior therapy), Moe walked all over some of the less experienced therapists. It's hard to say no to his face. It's hard to make yourself stop his giggles to get Moe to focus and do some work. And he knows it. He uses it.

If you looked like this, wouldn't you?

Written for this week's Red Writing Hood prompt: Physical beauty. It can open doors - and can also shut them.Write a scene in which a physically beautiful character is somehow impacted by that trait.

I is for Interaction

2011-06-16T09:44:00.000-07:00

Even though I know Jelly is developing on track, I can't help but scrutinize her every move. I'm in awe of her growth but also waiting for the other shoe to drop. She's highly verbal and smart, she is always matching colors and lining things up, and she is starting to have trouble with transitions, like getting out of the car or ending an activity. She is so clearly not straight-up autism, but maybe she has Asperger's. The truth is, she just has "two-year old" but I can't help but look for signs that something is wrong. I've been burned before.

One of my concerns has been that she hasn't shown a lot of interest in other kids her age. When we go to playdates, she prefers to play alone or with me. Although she's playing completely appropriately, the other two year olds we know have older siblings to play with, and I can see the difference in their behavior. Of course, Jelly has Moe, but he is at school all day and doesn't pay much attention to her when he is at home.

But in the last week or so, something seems to have switched. Jelly started following some of the other kids in music class, imitating what they were doing and sometimes even being the leader. She's making more of an effort to interact with Moe, and will often run down the hall yelling "Moooooe, where aaaare you?" She'll find him and say "Oh. Hi. Good job guys. We did it!" (Those are things either I or Dora say, which of course leads me to wonder if she's using too much scripted language. Ugh.)

Moe doesn't interact with other kids at all (though he does engage with adults), and his social and play skills are, along with language, my biggest concern. Yesterday, we were outside and the kids were spending time in the wading pool (the best $10 I ever spent). Moe was sitting in the water and Jelly was filling her watering can and pouring it into the pool. Moe loves to put his hand under pouring water, so he noticed what Jelly was doing and put his hand in the stream. They repeated this at least five or six times. They weren't quite playing house, but it was interaction, and I was so proud of both of them!

The Kiss in the Psychologist's Office

2011-06-14T13:27:00.000-07:00

Moe and I continue to be involved in the Pivotal Response Training study at Stanford. One morning a week, I leave Jelly with a babysitter and take Moe to see Dr B.

Going places with Moe can be a challenge. Because he will run off if not held tightly, I always need a plan. Park close to a parking ticket vending machine. Leave Moe in the car while I retrieve the ticket for the dash. Then get Moe out of the car seat and cross the long parking lot.

We enter the lobby of the child psychiatry building and check in. Moe pulls my arm or drops to the floor trying to break free. He tries to run down the hall. I steer him to the fish tank and we count the fish. We wander the lobby. One time he tried to get to the elevators. If we have to wait more than just a few minutes, we both come very close to a meltdown.

Eventually Dr B comes and gets us. She shows us to one of two or three different rooms, set up like little living rooms with couches and lamps. We exchange the business of the study, I hand her the forms I fill out every week and she gives me next week's assignments. Then we start.

We wait for Moe to get interested in some toys. We give choices of things to play with. We get shared control of favorite things, and make Moe request "more." We block access to favorite hiding spots unless we get a verbal request. One time Moe made up a game: get on couch, get down from couch, cross room, turn off light. Over and over he did this, and over and over we were able to stop him and ask him to say "down" to leave the couch, "off" to turn off the light, or "up" to get back up. It worked really well.

Sometimes, Moe just isn't very interested in the toys we have and he'll start to flip through a magazine that has been in the room since early May. I know the date, because it is a People magazine with pictures of the royal wedding. Moe flips the pages, stopping always at certain ones. Sometimes we hold the pages and ask him to say "turn" before allowing him to turn the page.

Moe is a fairly affectionate kid but he isn't much of a kisser. As I've written about before, if I say "give me a kiss," Moe will hold out his hand for me to kiss, a response he learned in the days when I couldn't reach him in his crib and I just had to give him one last good night kiss. So imagine my surprise when, last week, Moe was flipping through the magazine and all of a sudden he stopped, looked up, and kissed me. A real, on the cheek, kiss.

Dr B and I looked at each other with surprise and delight. We cooed over him for a moment, and then moved on. I don't have any idea what brought on that cute kiss. Perhaps he saw a picture of the royal couple kissing on the balcony. Or maybe he just felt the need to reach out and kiss me, as I do to him as often as possible. Whatever the reason, I basked in the glow of that moment for the rest of the day.

Moe hasn't kissed me again since that day. Like so many of his behaviors, I see amazing glimpses that last just a moment, then slip away so quickly I wonder if they really happened at all. But these moments keep me going, remind me that although Moe may not be able to express his thoughts or feelings, they are there inside him, just waiting to come out at the most surprising moments.

Special Needs Sibling Saturday

2011-06-11T08:15:00.001-07:00

I'm honored to be guest posting today over at The Squashed Bologna for her regular feature, Special Needs Sibling Saturday. This series has given me such insight into what it might be like for Jelly and Moe as they grow up together, and I'm honored to be able to share my story.

While you're over there, get to know Varda more. Her blog is all about being part of the sandwich generation, something I know many of you can relate to. She is a wonderful writer and our virtual paths have crossed in many blogging circles.

Now go read my post, Brothers and Sisters: The Next Generation!

With apologies to food bloggers and GFCF dieters everywhere

2011-06-10T18:09:00.000-07:00

Because I don't have time to write my post about Moe's last day of school.

And because Lynn blogged about pizza today.

And because it is one of the only ways I can get my kids to eat vegetables.

I now present to you my easy-peasy broccoli tomato pizza.

First, start with The Pioneer Woman's pizza dough. I made mine this afternoon. You can substitute whole wheat flour for all purpose if you want to. I usually do half and half, but today I used all white flour.

Spread it as thin as you can get it on a well oiled pan.

Top with sauce of your choice. Sometimes I use homemade, but this time I used Trader Joe's pizza sauce. Then add veggies of your choice. I love broccoli on pizza. The key is to chop it pretty small.

I happened to have some fresh tomatoes from our veggie delivery box that came today, so I put those on too. At one point, Moe came over and was watching me. He sampled a small piece of broccoli and ate it, so I gave him a bigger piece to eat. He took it from me and put it on the pizza.

People? Moe helped!


Moe's piece is the large one left-center

Then top with cheese. I try to keep shredded mozzarella on hand, but have been known to grate string cheese sticks. I don't recommend that for an entire pizza.

And bake in a hot 500 degree oven for around 8 minutes.

Let cool for a few minutes and serve to hungry children.

Note: Your toddler may decide not to eat the pizza, but prefer instead to sort her fruit.

The dough recipe makes a double batch, so wrap the other half in plastic wrap and pop in the freezer. Wedge between various frozen items from Trader Joe's.

Enjoy!

Happy Hollow and other places we won't be going this summer

2011-06-09T08:58:00.000-07:00

Tomorrow is Moe's last day of school. The teachers have been giddy with excitement. And much like last year, I'm wondering what the heck we're going to do all summer.

Moe will spend the first half of the summer in the district's extended school year (ESY) program. Although his teacher doesn't work summers, it is the same classroom and one of his current aids will be there as well. After the ESY program ends (I can't imagine how anyone thinks a four-week program is enough), Moe is going to attend a private autism preschool for the rest of the summer. Both classes end around noon.

Leaving me with long, hot summer afternoons to fill. The area we live in has wonderful activities for little kids. Happy Hollow Park and Zoo and the Children's Discovery Museum are all within ten minutes of our house. I can be at the beach in 45 minutes. Gilroy Gardens, an amusement park geared toward toddlers and preschoolers, is less than an hour away. We live near numerous parks with water features. There is a pool at the Y, and many beautiful swim clubs we could join.

Oh how I'd love to join a swim club. I'd relax by the pool while the kids splashed in the water with their friends.

Okay, okay. That last one is unrealistic for any parent with a two year old and a four year old. I got caught up in the dream for a moment.

The point is, I can't take both kids anywhere by myself, unless they are strapped into the stroller. Moe is just too much of a flight risk and Jelly couldn't keep up if he took off. I do have some babysitting help, but mostly to watch Jelly when I take Moe to therapy. Maybe I should have hired someone five afternoons a week. But that is expensive, and would seriously cut into my future swim club membership fees.

The good news is that we do have an enclosed backyard. We will be spending a lot of time out there. I got some sprinkler toys and will buy a little wading pool. We can take stroller walks around the neighborhood when it isn't too hot and air conditioning when it is. I'm fairly certain our house will be an enormous mess. But I guess it already is.

I will try to make the most of the summer, and like last year, we'll get through it. Maybe next summer, I'll be able to take the kids out myself. For now, there's only 74 days until school starts again.

The Paradox of Progress

2011-06-06T12:35:00.000-07:00

"It was all I could do to get through each moment, and each moment felt like an endless hour, yet days slipped silently past." --Elisabeth Tova Bailey, The Sound of a Wild Snail Eating

The kids like watching "So You Think You Can Dance." A couple of days ago, Jelly requested "watch dancing" so I shouted down the hall, "Moe, do you want to watch dancing?" He ran down the hall and plopped on the couch. A minute later, it hit me. He understood that.

More and more, Moe seems to be listening and comprehending. He can follow simple commands, like "sit down" or "let's go." This progress seemed to have taken both years of therapy and happened all of a sudden. This is the paradox of progress.

If you watch a snail creep across the ground, especially from a few feet away, you hardly notice it is moving. It seems like it would take forever for it to get anywhere. But if you look away for a few minutes, that snail will have made progress, and perhaps gone farther than you expected.

So many endeavors are like this, from weight loss to a child's growth and development. The changes happen almost imperceptibly. But then one day, you're packing away old clothes and replacing them with a new size. Or your son starts understanding the world around him a bit more.

The progress is there. Sometimes we just have to take a step back to notice.

This post was inspired by The Sound of a Wild Snail Eating, by Elisabeth Tova Baily. I was given a copy of the book as part of From Left to Write book club, but was not otherwise compensated for this piece. You can read other members' posts inspired by the book on book club day, June 7, at From Left to Write.

A Little Perspective

2011-06-04T21:22:00.000-07:00

I was planning to write about a toy today. It is a toy I bought a long time ago that the kids outgrew and I finally sold. The selling of this toy made me a little nostalgic and I was going to spend a few hundred words on why.

But then I found out a good friend of mine, a mom I know who has a daughter Moe's age, has lymphoma. She started treatment today.

My friend also has a newborn, her diagnosis coming after her baby was born via emergency C-section. She had been showing signs of what they thought was HELLP, but turned out to be cancer. Her week old baby is home and well, being cared for by family.

I can't imagine the heartbreak of a mom unable to be with her newborn baby. I can't imagine how her husband must feel, stretched between a newborn (and four year old) at home and wife in the hospital. I cannot get past this feeling of wanting to be able to do more to help.

Guessing

2011-06-01T21:32:00.000-07:00

Autism keeps you guessing. Behaviors come and go, progress ebbs and flows, and we're always trying to keep up.

For example, a couple of days ago, Moe decided to climb into Jelly's crib, and now he's been climbing in there any chance he gets. That crib has been there, in the exact same place, for two years and he's climbed into it maybe once before. So why the sudden interest? It is anyone's guess.

Meal time also keeps us guessing. Moe is a little bit of a picky eater, but not like some kids. But on any given day or week, I have no idea what he'll eat. Our go-to favorites, like macaroni and cheese, will suddenly be pushed away like I just put a bowl of gruel in front of him. Bananas have come and gone and are now back again as a staple.

And of course, Moe's sleep schedule always keeps us guessing. Not only have we had to experiment with schedules, melatonin and routines to help Moe fall and stay asleep, but we've had to keep up with what trouble he might get into during that time. First, we had to put up the crib tent to keep Moe from running down the hall at 2am, then we had to figure out how to keep Moe from taking off his diaper and pajamas, and most recently, Moe managed to actually wedge himself in between the crib tent and the outside. What will he do next? It's anyone's guess.

But I can't wait to find out.

Six Word Memoirs

2011-06-01T09:00:00.000-07:00

Are you familiar with six word memoirs? The idea is simple: tell your story in six words. I believe the idea originated when someone challenged Hemingway to write a complete story in six words. He wrote "For sale: Baby shoes. Never worn."

I've read some outstanding six word memoirs, and if you have time I recommend checking out the memoirs at Smith Magazine. Recently, Laura Shumaker (author, blogger, autism advocate) held a contest to write six word autism memoirs. I only had a couple of hours before the contest closed, but I entered three. Here they are.

"Holland Sucks. Want to go home."

For those of you not familiar, this refers to the Welcome to Holland essay that every parent of a newly diagnosed special needs child will come across. This memoir was not a winner, and I'm not surprised considering it isn't exactly full of optimism and acceptance. But sometimes it is exactly how I feel.

"Vaccines not the cause. What then?"

This memoir was a winner! The discussion over the cause of autism, and whether or not vaccines are to blame, plays a central, and often divisive, role in the autism community. I do not believe any evidence exists to suggest that vaccines cause autism, but the question "why?" is one that is always present in my mind.

"We need no words to love."

This was my favorite entry, and though not a winner, describes the parent relationship with a non-verbal child. I think it sums up my relationship with Moe perfectly.

My favorite entry of all (written by someone else) is "Never take your eyes of Joseph." This speaks to me on so many levels. I watch Moe to make sure he doesn't run off or hurt himself. I watch him constantly to keep him from getting into trouble in the house (i.e. splashing in the fish tank or dumping all the toys on the floor). But for years now, we are always observing, analyzing, assessing, and obsessing over Moe's behaviors and progress. Figuratively and literally, we never take our eyes off him.

There are some other fantastic entries, and you can read them all here. The winner, "Give anything to understand him better," was written by my friend, another parent at Moe's school.

Happy Birthday Moe!

2011-05-31T20:06:00.000-07:00

Today is Moe's fourth birthday. I'm amazed at how quickly the time has passed this year. One year ago, Moe looked like this:

He hadn't started school yet. We were just finishing up one of the longest, toughest years. It was the year of diagnosis. The year of in-home ABA. It was Jelly's first year of life.

And now, Moe looks like this:

He's still a peanut, but he's growing and changing. Although I don't know how much of the concept of a birthday he understands, Moe was genuinely excited at all of the special attention he received today. When I woke him with "Happy Birthday!" this morning, he greeted me with huge smiles and giggles. He was excited opening presents for the first time ever. And he clapped with joy when the class sang Happy Birthday to him.

But some things never change. Moe ate his cupcake with abandon. And then he stole his neighbor's cupcake. And then he ate half of mine. And then he had cake after dinner. The boy has always loved cake.

Is it just me or does he look a little sick here?

Moe had a great day. And it fills me with joy to know that he felt extra special today, even if he doesn't completely understand why.

But now, as I listen to him playing in his crib, giggling and squealing, I'm starting to regret allowing him quite so much sugar.

Sometimes

2011-05-30T09:51:00.000-07:00

Sometimes I think that everything about being a parent is awful.

You become a parent and suddenly life is all runny noses and dirty diapers and temper tantrums. From the moment your child is born, life requires weighty decisions that will affect them for the rest of their lives, from what to name them to what to feed them to where they'll go to school. And then, despite your best intentions and hard work, and regardless of what decisions you make, you are judged on those decisions, by others and by yourself.

And sometimes, in the middle of the night, when you are sick and just need some rest, your child will wake up. And he'll be so tired that he can't control himself, kicking and screaming and biting, and just wanting to be back to sleep. But his body or his brain won't let him. And it will be the biggest heartbreak you can imagine and also the biggest frustration.

And then that same child will lie in bed next to you and he will take your hand. He'll lace his fingers through yours and even if just for a minute, he will be calm. And even though you know the chaos hasn't ended for good, in that moment your heart will swell with a love you never knew possible.

And you wouldn't want to change a thing.

For Hire

2011-05-28T09:54:00.000-07:00

I'm considering starting a new business, a proofreading service. Have a billboard you're about to send to print? Call me first! Are you hoping to land that dream job? Let me check your resumé. Please.

I'm not saying everything I write is error-free. I'm sure this blog is riddled with typos and misplaced modifiers, dangling participles and the like. I use colloquialisms and "blog-grammar." But I'm certain every word in my blog title is spelled correctly.

Case in point: Almost every day I drive by a sign for "Casual Cut's." That unnecessary apostrophe drives me nuts! Unless of course this particular hair cutting establishment is owned by Mr. Casual Cut, in which case I apologize.

I realize that the owner of Casual Cut's, or the person delegated signage responsibilities, may not be a native English speaker. All the more reason to ask for help, I say. This is the permanent advertisement for your business. Do you want it to be incorrect?

Today I picked up a real-estate flyer outside of a beautiful house in a nearby neighborhood. Such flyers are usually filled with hilarious platitudes about the home. One flyer I remember mentioned repeatedly the joys of "Down Town living." Downtown is one word. And why use capital letters? The one I got today described "an outdoor entertainment area perfect for entertaining." I should hope so. I also hope the indoor kitchen is perfect for cooking, and the bedrooms perfect for sleeping. A simple word replacement would have made all the difference: an outdoor dining area perfect for entertaining. Ahhh.

That kind of advice is worth a paycheck, right?

Never thought I'd have his picture here

I know the house will sell despite the repetitious flyer copy and people looking for a cheap haircut won't care about the sign's misuse of the possessive tense. But as a job-seeker or advertiser, and especially as a writer, words are a representation of ourselves. It pays to proofread.

I apologize for the Andy Rooney-esque rant. Perhaps this cold the kids and I have has put me in a particularly ornery mood. Then again, people have been paying Mr. Rooney for his rants for years. If you're listening CBS, I'm available!

Frogs at Four

2011-05-26T08:32:00.001-07:00

Moe says the word "frog." It is one of the five words we identified in his IEP that he uses, if not consistently, at least somewhat regularly. He says it in the context of choosing the "Five Green and Speckled Frogs" song to sing at circle time at school.

Our goals for Moe this year were for him to use 100 words. It sounds like a lot now, considering we give him credit for about 5 words. But when you break that down to 10 words in 10 categories, and considering Jelly had 100 words and matching signs at around 18 months, it doesn't seem like such a stretch. Next year, we set the goal at 15 consistent words, 5 words in 3 categories.

As Moe approaches his fourth birthday, and the cumulative hours of therapy add up, I can't help but wonder if he'll ever talk. He'll tease us every so often with a word or sound that we never hear again. Just the other day he imitated my "splash, splash!" when he was in the tub. I hear a lot of stories about kids who started talking at four, five, or even six years old. So we'll keep working at it.

We do a lot with Moe. Outside of school, which is about 30 hours a week, he gets OT and music therapy, plus the PRT study. I wonder sometimes if any of it is working. Would we all be happier just relaxing at home? At music therapy, Moe spends a lot of time trying to get to instruments on the shelves, leave the room, or bang on the piano, rather than focus on the current activity. But he loves the frog song. I don't know if he loves the frogs at school because of music class, or vice versa. But either way, it shows me that he's making the connections.

So next year, we'll work on 15 words. I just hope "Baby Beluga" aren't two of them.

One of Us

2011-05-24T10:12:00.000-07:00

I awaited last weekend's autism walk with great anticipation. It was our first real autism community outing. I hoped I would feel a part of something. I wanted to feel understood without having to explain. But I was also apprehensive, as I always am when going places designated for special needs. I compare Moe to the kids who seem so much more capable, and I worry about his future when I see kids who are severely affected.

But the thing that struck me at this event, as it has before (you'd think I'd learn), is that if it hadn't been for the banners and t-shirts, the event could have been for anyone. As I looked around the crowd, it was impossible to tell who had autism and who did not. As I looked at banners for "Team Evan" or "Walking for Wiley" or "Autism Superstars," I tried to figure out which one was Evan or Wiley. Who is the superstar? And I rarely found him.

There was one notable exception for us. A boy, around 8 or 9 years old, came up to Moe and gave him a big hug. Moe, face buried in the boy's tummy, wasn't quite sure what to do, but neither did he fight it. Did Moe know that the boy was one of his own? Did the boy? I broke it up after a few seconds, afraid Moe might bite this sweet child. But it was a moment I won't soon forget.

From a distance, autism is largely an invisible disability, evident only after interaction, and sometimes even then it can be hard to discern.

This type of disability is tough for society to understand. When a person can't walk, we can provide a wheelchair and ramp. When a person can't see, we can provide braille instructions or allow a guide dog. But when a person has autism, we don't always know that a disability exists, and may mistake behavior for rudeness or worse. And if we were to provide accommodation, what would that be? Autism is such a wide spectrum.

AMC theater provides sensory-friendly films, and Pump it Up occasionally holds autism-friendly nights at their facility. It feels like we need to do more, but the specifics are hard to define. This is why awareness is vital. It will be impossible to provide accommodation for every person with autism. This would be like asking every restaurant to provide every person who entered it their own menu tailored just for them. So we must take it upon ourselves to recognize the signs, and give each person the time and respect she deserves. We will be better off for it, I'm sure.

We Walked Together

2011-05-22T10:13:00.000-07:00

We walked as a team.

We came with family.

Moe thinks his curls are his best feature.

And friends.

We were 6,000 strong and raised $400,000.

Some people came to fight.

Some came to learn.

Others came to cheer on sons and daughters, sisters, brothers and friends.

We walked for all of these reasons and more.

But me? I walked for Moe.

Thank you to Ann & David, Bill & Louise, Carolyn & Dave, Charlie, Cynthia & John, Daniel, Dani, Dave, Beth, Francesca & Dave, Gigi, Jen T., Jill, Jim, Joady & Bruce, Jody, Joel, Phil & Joyce, Kerry, Krista, LD, Laya & Rod, Linda, Michael & Jennifer, Michelle & Jon, Grandma Mira & Grandpa Rich, Grandma Linda & Grandpa Dan, Nancy, Phoebe, Rebecca & Marty, and Rickster. The Bush family raised $2370, and our team raised $4427.

Special thanks to Spencer Hardy Music Therapy for forming our team Music Therapy Rocks! And to Kim, Beth B, Beth H, and Karyn & Jim and their beautiful children for walking with us yesterday and everyday.