December 25, 2011

Santa's Little Green Balls

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?


December 21, 2011

Domestic Drift

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.




December 16, 2011

Occupy My House

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.

Update: The latest statistics show autism rates at closer to 1 in 88, higher for boys. 

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.

December 14, 2011

Writing Our Story

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!


December 4, 2011

Sensory Battles

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.

December 1, 2011

What's Next?

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

  1. I am crazy.
  2. 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.
  3. I've always wanted to write a novel and it was time to try it.
  4. 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.

November 29, 2011

One. Big. Update.

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.
-
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.

November 18, 2011

Awkward School Photos

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.

November 17, 2011

Will Power

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.) 

November 11, 2011

Problem Solving

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?

November 9, 2011

Expecting Adam

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.

November 6, 2011

There Has to be a Better Way

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?

November 3, 2011

Theodora: Actress, Empress, Whore

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!

October 31, 2011

Happy Halloween

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 :)



October 29, 2011

NaNoWriMo is Almost Here!

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.


October 27, 2011

Things I Have Done

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.




October 26, 2011

For Better or Worse

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.

October 25, 2011

My iPad is Not Magic

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.

October 24, 2011

Searching for Answers

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.

October 20, 2011

Things I've Never Done


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.




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