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 :)

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.

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.

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.

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.

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.

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.

The Small Picture

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?

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

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

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!

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

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 into a complicated recipe because I didn’t care if dinner hit the table at 6:00pm or 8:00pm. My husband and I could manage our hunger and were willing to wait for the delicious result of a long recipe. Now, it is a rare treat to find myself with hours in the kitchen. Having twins changed the pace of my cooking, as well as the requirements. Now, six years into cooking for kids I have a structure that works. I focus on meals that are at least one of these three things:

1. Make ahead

This is my favorite category. Now that 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 school year I have cooked Vegetable Strata, “Meaty” Vegetarian Chili, Parmesan Chicken Strips and Roast Vegetable Pasta during the day to serve that or the following night. These types of meals can typically be heated and on the table in under 15 minutes.

2. Quick

You have probably seen lists of 45, 30 or even 15 minute meals. These are wonderful choices for feeding kids because you can react quickly when they get hungry and have dinner on the table before a meltdown ensues. Some of my favorites in this category are various stir fries using frozen brown rice, sautéed vegetable quesadillas and breakfast for dinner.

3. Kids cook

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

Hopefully as we gain cooking experience and confidence, we can incorporate more of these three types of meals into our repertoire. If all else fails, you can eat microwave bean and cheese burritos with salsa and frozen edamame. This is our go-to, last-minute dinner. It is nutritious, delicious and on the table in under five minutes. Perfect for those days when dinner just is not happening.

The Soundtrack of Your Life

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.