April 29, 2010

Happy Birthday, Baby Girl

Your first year has been so different from your brother's. You see, life has been unfair to you this year. Like your brother, your life is also touched by autism. Not in the same way as Moe, at least we don't think so. But when someone in the family has autism, we all feel its effects.

During Moe's first year, I took him to Gymboree. You played at home during his Occupational Therapy sessions.

I took Moe to playdates in the park with other babies. You played at home with behavioral therapists.

Moe and I went to Mommy & Me lunches and took long walks to go shopping, while you stayed home and observed speech therapy.

I suppose in many ways, this is the fate of a second child, tagging along to your big brother's activities. But so much of this year has been anything but usual, anything but what I wanted or expected this year to be.

But here's the thing about you, Jelly Belly: you're doing just great. You are such a happy little girl. You love hanging out with your mommy and your brother, who you think is the coolest thing since Cheerios. You have a smile (with four teeth!) for everyone you see, though you still cling to me around new people. I'm amazed at the things you can do already, like showing me everything you pick up, feeding your baby doll, and imitating every sound I make. You're already starting to talk and use sign language, things you've probably learned from hanging around Moe and all these people coming to play with him six hours a day.

So I hope you had a great first year, Jelly. It was a rough one for me, but it would have been so much darker without you.

first cake

April 28, 2010

Solving the Puzzle

When my brother was sick for the second time, and it didn't seem we'd have much longer with him, I spent a few weeks back home. For a while, he was up and about, but eventually it became difficult for him to leave his bed. He was still awake and alert some of the time, so we would hang out in his room, talking, reading, or watching TV. Even if he was snoozing or we weren't sure how much he was taking in, we'd sit and talk just to be near him and so he wouldn't feel isolated.

During this time, my aunt came to visit. My mom, my aunt, and I were hanging out with my brother in his room reading the newspaper, sharing the stories, especially the baseball news. He hadn't been very talkative that morning but we just kept on talking, hoping that at least the sounds of our voices would be comforting. At one point, he closed his eyes. We didn't know if he was sleeping or just blocking out some of the world for a little bit.

We started to do the crossword puzzle. My family likes to do the Sunday crossword puzzle together. We find that we can usually finish most puzzles if we work together. Usually one person starts it and another will pick it up and make some progress. Eventually it gets done. This time, we were doing the puzzle out loud. I think I was writing and reading the clues. I was filling in the ones I knew and my mom and her sister were filling in what I couldn't get. I don't remember the clue, but I was stumped and read it out loud. Without missing a beat, my brother said the answer. And of course, he was right. It was probably some obscure baseball trivia, but it could have been anything. He was smart like that.

Not sure why I'm writing about this now, but I think about this day a lot. We saw a glimpse of my brother still left despite the fact that his brain was betraying him. Sometimes I feel this way about Moe - like I catch little glimpses of his brilliance even when his senses or motor planning or who knows what is making him behave in funny ways. This time, though, it's in reverse, and we have his whole life to figure it out.

April 27, 2010

Ladies and Gentlemen, It's Assessment Time!

Assessments, assessments, assessments (sung to the tune of Announcements, Announcements). Assessments are a necessary part of life with a special needs kid, especially if you are receiving services paid for by the government in some way. As I've written about before, Moe is transitioning out of Early Start services and into school district services. The cut-over is his third birthday, which is right around the corner. So now, we're deep in assessments.

This will be our third round of assessments with Moe. Our first was when we entered Early Start. After 6 months of services, we had a checkpoint assessment. We just completed exit assessments with his current ABA provider, have started the intake assessments with the school district.

The first time we received the reports, I was pretty upset. It is hard to hear that your 2 year old child is at a 9 or even 18 month level in something, especially for an overachiever like me. I've since learned that assessments are only a way to qualify for services. At best, they can serve as checkpoints, but they certainly don't tell the whole story. We know Moe's strengths and abilities, and I believe it is hard to accurately assess what a not quite three year old, mostly non-verbal child does or does not know. Still, I've gotten a sneak peek at some of Moe's exit assessment results, and I can't help but react.

Our OT told me that Moe made some great gains in all areas, but particularly in fine motor, where he was at a 31 month level. That means he's almost at age level. Woo-hoo! But then our speech therapist told me that Moe actually lost some points in communication. We believe it is because we started with a 24 month baseline when we started, which assumed he had certain skills that he didn't have. This time, we started with a lower baseline, so his scores seemed to go down. It makes sense, but still, it hurts to hear.

I can't wait for assessment season to be over.

April 21, 2010

Keep on Truckin'

Even though I pretty much refused to talk about it for a full year from the time Moe was born, we were pretty sure we would someday want a second baby. In anticipation, I saved all of Moe's baby clothes. Once we found out we were going to have a girl, I still kept quite a few of his things that were unisex or would pair well with girl clothes, but I haven't had to use very much. Her pink onesies look adorable with his brown pants, but with baby gifts, a clothing exchange, and some donations from friends with girls, (and a few key things I just had to buy her myself), Jelly has plenty of pink in her wardrobe.

For some reason I didn't end up with any girl pajamas in her current size. But I have plenty of Moe's old jammies. It is fun to see her in these cute "boy" pajamas that Moe was in what seems like yesterday. I can picture him in them so clearly and it is fun to remember that time when things were still pretty free and easy with him.

Baby boy pajamas are jut like baby girl pajamas except for the colors and decorations, and of course it doesn't matter if she's sleeping with footballs, dinosaurs and puppies instead of flowers and butterflies. Perhaps it is even healthy! But there is one pair that cracks me up.

 IMG_2207     IMG_2211

My "Lil Trucker."

April 16, 2010

How does she do it?

I've had many people ask me how I manage to get it all done. Frankly, it's tiring to hear the question over and over. But I understand. You wonder how I find the time to raise a special needs child, a baby verging on toddler-hood, write insightful and inspiring blog posts, teach sign language, and still be so well put together? In this very special post, I'm going to reveal my secrets to you. (In condensed form of course, lest someone in the industry reads this and should want to publish an unabridged version in book form.)

Tip #1: A cluttered house is a cluttered mind.

I have instilled in my children that they must never leave large messes, and always put away one toy before playing with another.

clean house

Tip #2: You are what you eat.

Eat only fresh, preservative-free, organic foods. Baby food should be made from scratch using only organic fruits and vegetables. If you can't pronounce an ingredient, you should not eat it.

Fresh foods

Tip #3: Manners are at the heart of a civilized society.

No shirt, no shoes, no service. Always use a knife and fork and keep your napkin on your lap.

 good manners

Tip #4: Do not let your children watch television.

Television is at the heart of the obesity problem in this country. Strong bodies = strong minds. Go outside and play!


Tip #5: Your pet is a reflection of you.

Dogs and other household pets must be as well-mannered as your own children. They need plenty of exercise, should never be allowed on the furniture, and must always be in the calm, submissive state.

well behaved dog

Tip #6: Learning and growing is serious business.

Time spent goofing off is time you could be learning something.

seriouse jb  very serious  

I hope that I can continue to inspire and teach you, my dear readers. If you have requests for other words of wisdom, please leave a comment below. For my fashion tips, please see my recent post at the Silicon Valley Moms Blog.

April 13, 2010

Bloggers in Real Life

When we first received Moe's diagnosis, I started reading everything I could on the Internet about autism. In addition to news articles and autism organizations, I found many, many blogs. Because most people include a blog-roll (list of blogs they read), one blog leads to the next. I devoured every free moment with reading people's personal stories, some about autism, some not.

That level of commitment is unsustainable, and though I still check in with many blogs, over time I've become a loyal reader to a relatively small number of blogs. Some are silly, others happy and beautiful, but many contain sad stories of coping and grief. It feels oddly voyeuristic to peek into other people's lives on a daily basis (though clearly something we as a culture love to do), and I wonder if feeling sad about things that happen to other people who I've never met is a healthy pastime. But I also know that this connection to people across the blogosphere is one of the reasons I started blogging. I want not only to share information, but also to share experiences and connect with others who are in the same boat. I've received comments and emails from readers I've never met with encouraging words that I return to over and over.

There have been countless cases where the blogging community has crossed over to the real world to provide help to people in big and small ways. I just read a touching story about a young boy, Jacob Taylor, who recently lost his battle with a brain tumor. There are no miracles in this story, just one blogger and a baker, helping out in their own ways. The story is on one of my favorite blogs, Cake Wrecks, written by people I don't know but wish I did. (The story is about half way down the post, but if you are a fan of amazing cakes or Food Network Challenge, you should read the whole thing.)

If you want to read Jacob's story, you can do so on the family's CaringBridge page.

April 6, 2010


Moe has some crazy hair. He was pretty much bald as a cue ball when he was born, and by a year he still didn't have much more. He didn't even have his first hair cut until well after his second birthday. But when his hair did begin to grow, it was curly right from the start.

Moe's first haircut was challenging. He cried and squirmed the whole time, but the people at the local kid's haircut place did a great job. That was 8 months ago and Moe was in desperate need of another trim. Yes, he's almost three and had only had one haircut. I had been putting off taking him because I really didn't want to experience a major meltdown in the haircut chair. And although Moe doesn't have the issues some kids with autism have around activities like washing hair, I didn't think he'd like being confined to a chair with a stranger in his face.

But finally, it was time. His curls had gotten seriously out of control:


So we bit the bullet and went. I came prepared with some toys full of sounds and lights, the ones I don't usually let him play with because he tends to become overly obsessed. We got him in the chair, they sprayed the water on his hair and...he was fine. It was a piece of cake.

Moe's hair still has plenty of curls left. Even though I told them to cut it very short, I'm pretty sure they thought I'd be upset if all the curls were gone. So now it looks like this:


Still messy, but better.





April 2, 2010

World Autism Awareness Day

puzzle heart "Quick! Turn on NBC," my mom instructed over the phone. "They're talking about Autism on the Today show." Since the last time an 8:30am phone call started with "Quick! Turn on the TV," the twin towers were coming down, I had remote in hand before I heard "Today show" and "autism." I didn't realize it until later, but today is Autism Awareness Day, and 5 years since Autism Speaks was launched.

Autism Speaks is a somewhat controversial organization in the autism community. I have not researched this much, but as I understand it, there are a few reasons:

  • Autism Speaks talks a lot about finding a "cure." People with autism don't think of themselves as diseased, and thus, are not looking for a cure.
  • The puzzle pieces on their logo imply that somehow people with autism are missing something, or are a puzzle needing to be solved.
  • Until recently, Autism Speaks had very little representation in their leadership by adults with autism.
  • The organization focuses largely on children and ignores the issues of adults with autism.

These points are valid, and I don't set out here to defend Autism Speaks. I do think Autism Speaks has given many in this country an awareness of autism they would not otherwise have. As a parent of a child with autism, I do long, if not for a cure, at least for understanding. And I like the puzzle analogy. I don't think of Moe as missing anything. I believe our worlds are mutually puzzling, but something that we can piece together as a team, much like my mom, brother and I would sit around a bridge table putting together jigsaw puzzles. Only this time, the puzzle is about a million pieces and we've lost the box top with the picture of what it is supposed to look like. But we're starting with the edges, and then take it from there.

To watch the clip from the Today show, click here.

April 1, 2010

My First Product Giveaway

One of the advantages of being a part of the Silicon Valley Moms Group is the opportunity to be in a network of influential women and moms. For example, they have a book club, where all the moms will review a book on their personal blogs on the same day. The book is generally donated by the author or publisher.

They also have the opportunity to  do product reviews. Although I did not join the group in time to review their latest product, I am able to enter my readers in a giveaway for the product they reviewed in March. It is called the Cry Canceler. You can read the review on the Silicon Valley Moms Blog.

To win, just enter a comment on this blog. I'll randomly select one name, which will go into the larger drawing form all the blog winners, where five total will be selected. Good luck. Mamas, you're going to want this!


Related Posts with Thumbnails