May 31, 2011

Happy Birthday Moe!

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.


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May 30, 2011

Sometimes

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.


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May 28, 2011

For Hire

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!

May 26, 2011

Frogs at Four

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.

May 24, 2011

One of Us

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.


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May 22, 2011

We Walked Together

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.


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May 20, 2011

IEP Season

Spring is in the air, and though many of you might be sneezing and wheezing with seasonal allergies, most of the parents at Moe's school are having reactions to the other thing that starts coming up around mid-April: IEP meetings.

Yesterday, we had Moe's Individual Education Plan (IEP) meeting. We discussed the year's progress against his current IEP as well as the aspects of the Competent Learner Model that is used in our special education classrooms.

It is hard to believe that one year ago, we were in our first IEP meeting, getting ready to transition out of our home-based ABA program and into preschool. We had no idea if this program was a good one. We set goals that were a bit of a shot in the dark.

Moe did well this year. His strength's are in areas of problem solving, and I think I'll take some time over the next few weeks to go through the specifics of the CLM and how he's progressed. Moe is also making progress interacting with adults. His teacher believes this is a precursor to playing with other kids.

Next year, Moe will get the same services he's getting this year: the autism preschool program with our beloved Mrs. M, as well as some group and individual speech therapy. We set out fewer IEP goals than last year, but they are more focused, especially around communication and play skills. There are also some pre-academic goals around reading and writing. The highlight of the meeting was when Mrs. M showed us some tracings Moe recently did of his name. He required assistance, but she said he was excited about writing his name and did a pretty good job, especially with the first letter!

Our biggest challenge will be getting Moe consistently using his skills, since he will often do something a few times, then be done with it. Then out of the blue, a few days or weeks later, he'll do it again.

Because the classroom uses the CLM, they are always working on moving the kids through the areas the model identifies as required for school success. So even if certain skills are not identified as IEP goals, they are still covered as part of the CLM.

I am disappointed that Moe wasn't able to meet our speech goals this year. We had hoped he'd have 100 words (10 words in 10 categories, like toys, foods, animals, etc.) but we've identified 5 words that he uses fairly consistently: yeah, more, open, frog and jumping. So next year, we've set a goal of 15 words. It is our hope that once he starts speaking, he'll acquire new words rapidly, but for now, maybe focus will help.

For many families, the IEP process can be stressful and contentious, sometimes involving advocates and lawyers. I think it can be especially hard to get services for kids with high-functioning autism and Asperger's, since they often assess well and get good grades. We could fight for more, and the one area that bothers me is the extended school year program, which only covers four of the 10 weeks of summer. We're going to be sending Moe to a private preschool for the second half of the summer, and we've thought about asking the school district to pay for this, since Moe clearly needs to be engaged during that time. But as of right now, we've chosen not to take on that fight.

How's everyone else doing with their IEPs?


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May 18, 2011

End of Days

There's a billboard not far from my house publicizing the upcoming end of days. Apparently, the day of judgement will take place on Saturday, May 21. This coming Saturday.

I don't believe this for a number of reasons:

  1. I'm not a Christian
  2. I don't think this is the kind of thing that can be predicted
  3. I'm not crazy (at least not in this way)

Even so, this got me thinking. If the end of the world were coming, what would I do? I only have a few days, so it's not like I could travel far to see something I've always wanted to see (gorillas in Africa? Pyramids in Egypt? The rain forests?). I guess there are a few people I could express some feelings to, but I don't have a lot of unfinished business or things left unsaid. I wouldn't want to spend my last days doing any kind of crazy drugs or being otherwise out of my mind. Besides, who would feed the kids?

As it turns out, on May 21 I'm going to be walking in the Bay Area autism walk. I'm going to be with my husband and two beautiful children. I'm going to be with my best friends. I'm going to be, for the first time (and I hope not the last), surrounded by hundreds, probably thousands, of people who are there to support me and my child. We won't be guests in someone else's world. And I expect it to feel great.

So, if the world does end on Saturday, I can think of no place else I'd rather be.

This post written for Alphabe-Thursday, letter E. There are still a few days left to donate to our walk team. If the world doesn't end, Autism Speaks could use your donation. Just click the thermometer on the right!

May 14, 2011

Bending

Today I'm over at Hopeful Parents. Come read my poem about being pulled in many directions, something I'm sure most of you can relate to.

May 11, 2011

Delivery Day

With mother's day still in my mind, and Moe's fourth birthday just a couple of weeks away, I thought I'd share the story of Moe's birth. It seems like a blogging rite of passage for us mother-bloggers, so for today's Alphabe-Thursday post, I'm going to write about Moe's Delivery Day.

On May 14, 2007, I was put on bed rest. My pregnancy up to that point was relatively easy. I had gestational diabetes, but controlled it with diet and exercise, and probably had a much healthier pregnancy because I had to watch my food intake so closely.

On that day, I had a doctor's appointment and an ultrasound that showed I had a low amniotic fluid level (oligohydramnios) . The levels were not dangerously low, but this can happen when the placenta becomes less efficient. I was put on bed rest. It wasn't strict, but I couldn't be on my feet for very long, which meant I couldn't exercise and couldn't work. I was six weeks from my due date.

Leaving work actually meant quitting two jobs. I was working as a Product Manager at a start-up, and was also serving on a grand jury (the judge did not let me delay jury duty even though my service was scheduled beyond my due date). So I cleaned out my desk, emailed  the DA, and planned to spend the next six weeks pondering baby names.

But on May 31, the level had dropped again, and my doctor calmly told us to go to the hospital. I would be induced. I asked if I could go home first and get some things; she said no. I called my parents in LA, and Jeff and I went to the hospital, where the nurses were expecting us. Soon I was hooked up to the contraction and heart monitors and was put on a Pitocin drip.

Long before this day, there was never any doubt in my mind that I would get an epidural. Once on the Pitocin drip I had strong contractions right away, but for some reason I told Jeff I wanted to wait to get the epidural. After probably 3 strong contractions, he had seen enough and pres the nurse button himself. I didn't object.

Unfortunately, Moe wasn't tolerating labor. Every time I had a contraction, his heart rate would drop. The contraction would stop and his heart rate would return to normal. We spent a couple very stressful hours watching those monitors. The nurses stopped the Pitocin. Moe did better but labor stopped.

Time passed.

When my doctor came on call that evening, she said she thought we should do a c-section.  Minutes later, there was a flurry of activity. A nurse was in to prep me, Jeff put on scrubs, and we headed to the OR. Moe was born within minutes. He was healthy and weighed about 6.5 lbs.

I saw Moe for a minute or two before they took him to the nursery. At some point we took a picture. Jeff stayed with me while they took Moe to the nursery. I was have a very uncomfortable reaction to the anesthesia, shaking terribly, and was kind of freaked out. And although it only took a few minutes to get Moe out, it took about 25 minutes to sew everything back up.

The whole thing felt surreal. The anesthesiologist and intern were having some kind of strange conversation, and my doctor and assistant were counting out loud. I felt like I was in a David Lynch movie. I later learned that they count to make sure they have all the sponges and things out of you. In my head, I kept chanting a mantra to keep calm. For some reason, mine was "no pain, no gain," like I was training for a triathlon or something.

Once in recovery, I was starting to panic about not being able to move my legs. Just then, my parents showed up, straight from the airport. My dad promised me that the anesthesia was wearing off, and reported that I could already move my toes. They all took turns seeing the baby in the nursery and eventually we made it to my room in maternity.

And then the real fun began.

Could be a movie poster for the next David Lynch film.

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May 9, 2011

That's Gonna Leave A Mark

I was feeling pretty good today. I just finished Big Daddy Autism's book (available now!), and, as he notes, optimism is contagious.There are so many great pieces, by him and other contributors (including me), that really make me think, no matter what, we're going to be okay. I was starting to feel like maybe I'm finally adjusting to our new normal. Moving toward that holy grail of Acceptance.

Then Moe bit me. We were having a really fun time playing on the floor. He was giggling and snuggling. Then Jelly, who simply cannot let me have a moment alone with Moe, ran up, squealing the whole way. She crashed right into me. Moe, who is not too excited by Jelly's presence, rolled over to get out of the way, and as he rolled, he bit my leg. Broke the skin this time.

Moe isn't malicious when he bites. He doesn't do it out of anger. But when Moe gets excited, he gets a little manic, and the deep pressure of biting is how he self-regulates. He'll go to his toy monkey, a book or other "appropriate" item first, but if you happen to be in the way, look out. Usually I can see it coming and avoid it, but this time I was completely surprised.

And all I could think, after a string of expletives that I try to keep off my blog but feel perfectly comfortable spouting off inside my own head, was "I don't want this anymore." And I meant it.

So much for acceptance.


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May 8, 2011

How It Happened

They gave birth to me:

He married me:


He made me a mom:

And she completed the picture:

Happy Mother's Day from my family to yours!


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May 6, 2011

Sibling Rivalry

I worried that Jelly would get lost amid Moe's needs, his therapy schedules, the extra time and energy he requires. But from her earliest days, Jelly has demanded my attention.

When Moe sits on my lap, she demands to sit there too. When Moe has a toy, she wants it. She even gets upset when I give him his vitamins. She is not old enough to understand that she is not the center of the universe. And I worry about the day she figures out that Moe's needs will need to come first. 

Will she be jealous of the extra attention he requires?
Will she resent the things she can't do because they don't fit with Moe's schedule?
Will she envy the relationships her friends have with their siblings, the vacations and outings other families can take that we cannot?
Will she act out in an effort to remind us that she, too, deserves one hundred percent?

Moe does not yet seem jealous of Jelly. He is happy to be with me, or play on his own. He doesn't put up a fight when Jelly takes a toy right out of his hands. But someday he might.

Will he be jealous of the attention Jelly gets just because she is able to ask for it?
Will he hide behind her vivacious personality, fading into the background?
Will he be jealous of how easily Jelly learns new things, makes friends, navigates the world?
Or will jealousy be something with which Moe is never burdened?

Sibling rivalry is a normal part of growing up. Jealousies may be a little more complicated in families that have special needs, but it is not unique to us. I am heartened by the people I know who have siblings with disabilities. They are educated and compassionate, often becoming advocates and educators both personally and professionally. But most important, they are brothers and sisters like any other: annoying, loving, protecting, and with a relationship all their own.

Today's piece was inspired by the Red Writing Hood prompt "jealousy."
 


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May 4, 2011

Could We?

We went to an open house last weekend. It's in the neighborhood we want to live in, just blocks from the house we used to rent. It's an historic home, completely renovated. The master suite has a sitting room almost as big as our current bedroom. The upstairs bathroom has a claw-foot tub. And the kitchen looks like this:
It is our dream house. One I can picture growing old in, hosting book clubs and birthday parties and thanksgiving dinners. Figuring out ways to keep our teenage daughter from sneaking out of the upstairs balcony. The yard is lovely.

But the dream house is not in our current school district. If we bought this house, we would have to change Moe to a new school, something we said we absolutely would not do until he was ready for kindergarten and would leave his current program anyway.

But this house. Just look at this bathroom.
So we asked ourselves, could we? Could we take Moe out of the school with the teachers we love so much? The other school district is good, arguably better, at least for general education. Who's to say the new program wouldn't be even better than the one we lucked into here? So we're researching. Asking around. Thinking about it.

The truth is, we can't afford this house. But if the stars aligned just right, and the sellers lowered their asking price and we stretched a little, maybe we could. But probably not. But you never know. For now, we're just watching and waiting, hoping and dreaming, and asking ourselves: could we?

This post written as part of Jenny Matlock's Alphabe-Thursday. Today we are on the letter C, which in this post could stand for "Could we?" or my alternate title, "Chef's Kitchen."


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May 3, 2011

Welcome to the Dollhouse

Friday was Jelly’s second birthday and thanks to Jeff, we were able to give her a fully-assembled dollhouse when she woke up. Poor Jeff had already left for the morning and didn’t get to see the big moment.

I don’t know why this always amazes me, but Jelly saw the dollhouse and knew exactly what to do with it. By that, I mean she played with it completely appropriately. She wasn’t rearranging furniture or decorating the walls, but she was really excited about the house and the doll family that goes with it. But she didn’t climb on it, take it apart, or put the pieces in her mouth. In fact, the second thing she did was take “the Daddy” and had him climb “up up up” the stairs. (The first thing she did was take the Cabbage Patch Doll she was already holding and put her in the house. Clearly, we need to work on her sense of scale.)

When I dropped Moe off at school that morning, I mentioned to his teacher that we got the dollhouse. She said “it’s interesting to see ‘true’ play, isn’t it? It starts so early.” Those words, so true and obvious, really struck me.

Jelly’s second birthday was an emotional one for me. I assumed that this was because it marked the end of her baby-hood. She’s growing so fast, and doing amazing things every day. But as she grows, she also shines a spotlight on Moe’s delays. I’m quite aware of the ever-growing list of things Moe isn’t doing, but seeing things like “pretend play” in action makes this list real. We still have so far to go.

Here’s a short video of Jelly playing. The first part is a little bit of the dollhouse. the second half is Jelly having one of the dolls do the Hokey Pokey. She's really cute, but I will say that in the cuteness department, Moe is keeping up just fine.
video




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