A Little Bit of Bragging

I don't spend a lot of time bragging about my kids' accomplishments. This might because they are one and three years old and don't have a lot of accomplishments, per se. This might also be because Moe's accomplishments, though huge to us, are more like baby steps to others with kids his age. And Jelly's feats are, by now, old news to those who have already gone through them with an older child. But this is my blog and I can do what I want to, so I'm going to brag about a couple of very cool things that happened in the past few days.

As you can imagine, I tell Moe "I love you" about a thousand times a day. I want him not just to hear it but to know it in his bones. I used to be able to kind of sing "I....looove..." and he'd fill in "yoooou." But those fill-in days are long behind us. So the other day, he was sitting on my lap. You might say he was "cuddly." I'd call it "sensory seeking." But either way, we were at the table and he started to squirm like he wanted to get down. As I was putting him down, I said "I love you!" And then, Moe said "love you!" Let me repeat,

MOE SAID "LOVE YOU!"

Then walked away like it was no big thing. Jeff and I couldn't believe it (and I was so glad he was there to hear it too). It was truly one of the highlights of my entire life. I don't know if he was just repeating back what I said (which isn't something he usually does), or if he's starting to learn the response, but I don't flippin' care. It was awesome.

Then, there's this:

This is Jelly's work. We were at our mommy & me class. On one side of the dance studio where the class is held, there were a bunch of vehicle toys, like cars, airplanes and boats. All the way on the other side of the room, there were these two bumpy logs. I don't know what they were for, other than looking and feeling interesting. Jelly played with the cars for a while. Then she explored and found these logs, and looked and felt them for a bit. Then she got up, walked across the room and picked up two boats. She carried them all the way back across the room and put them down as shown: the blue boat on the blue log and the red boat on the red log.

I have no idea why she did this or how she thought of it. This certainly wasn't imitation of any sort. I don't know what it means (and when you have a special needs kid, of course everything has to mean something). Color matching could be a totally age-appropriate developmental step right now. I have no idea. But clearly, she's a genius.

We Are Each Other

Today’s post is part of the From Left To Write book club, and is inspired by the book Room: A Novel,by Emma Donoghue.

I suppose it is common knowledge that babies can hear external sound when they are still in the womb. They recognize familiar voices, and will turn toward the sound of their mother’s voice as newborns.

I remember when my friend was pregnant with her twins she told me that babies can learn to recognize songs before they are born. You play a song over and over while you are pregnant. Then, after the baby (or in her case, babies), are born, you can play the song and it will comfort them. You want to pick a song that you don’t mind hearing a lot. I attempted this by playing "Enjoy the Silence" by Depeche Mode every day when I was driving to and from work. I’m not sure if it worked, but even now whenever I hear it on the radio I tell Moe that this is “our song.” (Looking back, maybe I should have picked something more like “Talk Talk,” but that is a discussion for another day.)

I remember during these commutes to work when I was pregnant with Moe, I had the feeling that I didn’t need to actually speak out loud for him to know what I was thinking. The fact that he was growing inside me, physically a part of me, made me think the he could somehow read my mind. I knew it didn't really work this way; Moe had his own ears and his own brain, of course. Although I was fascinated to learn that “prenatal researchers believe that there is indeed some connection between what a mother thinks and how her baby feels, and that from six months on a preborn baby can share mother's emotions via the hormones associated with them.” (From Dr. Sears) This makes the song experiment even more interesting. It's not just the familiar sound of the song, but, assuming the song you choose makes you feel good, the baby also remembers how that song made them feel.

Even after Moe was born, I continued to have this feeling that we were almost psychically connected. Maybe it was just habit from the 9 months of pregnancy, but it was hard for me to think that there would be something Moe could do or feel that I wouldn’t also do or feel, and vice versa. I know I'm not alone in this feeling. I’ve heard of parents saying they sensed the moment that something happened to their child, even if that child was thousands of miles away. I don't think this actually happens outside of the Discovery Channel, but I do understand why a mother would feel like it could.

My connection with Moe is different from the connection I have with Jelly. Logically, this is probably because Moe is my first born. I had time to bond with him – and only him - when he was a newborn. He made me a mother. But emotionally, (dare I say, spiritually) I think there is something else to it. Maybe it is because Moe doesn’t talk that I’ve had to spend a lot more time learning his non-verbal signals and to intuit his needs, using powerful mommy sense to understand his feelings and know how to comfort him. But logic doesn't seem enough to describe it.

There are times when Moe and I will be playing together, maybe on the couch or snuggled on my bed, and he’ll stop and look right into my eyes. And at those moments I really focus on him, sending him all my best thoughts for him, wanting him to understand how much I love him and believe in him. And he’ll stare back, and I swear, he knows every thought in my head.

I was given Room by the publisher free of charge, and with no further obligation, as part of the From Left to Write Book Club.

The small world of early intervention

I’ll never forget one of the first times I started to feel like something was really different with Moe. I had enrolled us in a mommy & me class at the local community center. It was held in one of the preschool rooms, and I was so excited. I remember the class had a pretty wide age range, something like 9-36 months, and Moe was somewhere in the middle. I think he was around 17 months and had probably just started walking, but he may still have been crawling.

The class was really cute, structured like early preschool. The room had a dress up area, and a reading corner. It had art tables and a fish tank and a guinea pig. Unfortunately, Moe had very little interest in doing anything but wander around the room. Most of the kids were older by quite a bit and many of the parents already knew the teacher. It seemed like it could have been a fun class, but Moe was not ready. He was so too young and far behind, and the teacher was so busy catching up with other parents that I didn’t get to talk with her at all. I was really disappointed. I didn’t go back.

Now that Moe is in school, I decided to enroll Jelly in a similar class at the community center. It isn’t the exact same one – this class is for a smaller age range and is in a different room - but the teacher is the same. But this time is totally different. First, Jelly is one of the older kids in the class. And second, she is right where she needs to be. She is talking and signing and running around like she owns the place. I know that parenting isn’t a competition. But it does feel really nice to see your child doing well.

In addition, another parent noticed Jelly signing. We started talking because she signs with her daughter, who is a few months younger than Jelly. Somehow it came up that she is an occupational therapist. Turns out, before she left to have her baby, she was the OT at Moe’s school! She knows the magnificent Mrs M and remarked how lucky we are to be in her class.

The teacher then asked a question of the OT. She has a daughter who had a stroke at age 6. She is now 13, and still struggling with some physical challenges. We started talking about going through the system, and the challenges of getting support in mainstream education. I’m always surprised when I meet someone in a non-autism related activity who is dealing with special needs. I’m not sure why I’m surprised since I’m there too. I’m reminded time and time again that life is challenging for so many people.

Looking back on that first class with Moe, I realize I should have just spoken to the teacher about how I was feeling. Of course, at that time, I was only just suspecting a problem and I think I was too afraid or unsure to bring it up to anyone. It’s too bad. I know now that I might have found a kindred spirit, or at least someone who could have been helpful and understanding at a time when I was going to really need it.

The Magnificent Mrs. M

Moe is now in his fourth week of preschool, and we’re pretty thrilled about how it is going. Despite the fact that I have already had to pick him up early from school a few times because of a bloody lip and a bout of, let’s just say a stomach ache, I am for the first time 100% positive that he is in the right program.

There are many, many different programs for kids with autism and they are based on many, many different philosophies, like Floortime, ABA, or PRT. Ours is based on the Competent Learner Model. In practice, most of these programs seem to me to look very similar, and I’m convinced that the success of any given program depends first and foremost on the skill of the teachers involved. And Moe’s teacher, the Magnificent Mrs. M, is the best. There are also two permanent aides in the classroom.

Mrs. M sends home a communication book every day with a quick note about what happened in class that day. I think all of the kids get the same basic summary, but often there will also be a little handwritten note from Mrs. M. Parents are encouraged to write in the book to send messages back as well.

Here is part of the note from the first day of class.

Moe, who barely spoke a word the entire summer, talked in class. This does not seem to be a fluke. From the second day of school:

Check out my mad photo editing skills!

The book is full of notes like this. Every day, Moe has a little bit to say. Even last week, when I picked him up early because of aforementioned stomach issue, Moe’s note said he “did the hand motions for my favorite song…The Monkey!” And this seems to be transferring to home as well. Moe has been using words here and there, and he even spontaneously asked for water – using the sign for “I want” while saying “water.” I didn’t prompt him, he just made a request. This is HUGE. It means he isn’t just labeling things. He is starting to communicate. I’m hopeful it continues.

Here is my favorite note so far. I think you’ll understand why I think there is something very special about this classroom. This is from the day after Moe had fell on the playground.

He’s the light of my day too.

New York, New York

There is one thing I often wonder about. It sits in the back of my head, a constant What If? I wouldn’t call it as severe as a regret, but perhaps a missed opportunity. This question I ask myself over and over is: Why didn’t I stay in New York?

I am a California native, raised in SoCal, moved to Berkeley for college, then landed in Silicon Valley, where I am today. But for two years, I left Cali for business school at Yale in New Haven, Connecticut. It was a great decision and a great two years. New Haven is just an hour train ride to New York City, and my roommate and I visited as often as I could.

We saw great theater, including an alternative Swan Lake, Art, Closer, Proof and more. We ate at amazing restaurants, like Balthazar, Eleven Madison Park, Bond Street and Cafeteria. I went to great clubs (both gay and straight), went ice skating in Central Park, and owned my very own Metrocard. I learned that I still love the Village as much as I did the first time my cousins took me there when I visited in high school. I ate delicious cupcakes at Magnolia Bakery (before they went there on Sex and the City) and shopped in SoHo. I felt independent, and maybe for the first time in my life, pretty darn cool.

For some reason, when school was over, I couldn’t wait to get back to California. I didn’t even interview for a single job in New York. I was tempted by the excitement and energy of Silicon Valley. My family was here, including my brother who was still fighting cancer. And I knew I wasn’t really cut out for all that cold and snow for very long. For a few years I went back for long weekends to visit a friend who still lives in the city. But then I got married, and had kids. My east coast friendships faded and it has been a while since I’ve been back.

Ultimately, I think coming back to the left coast was the right decision. But I really do love New York and a little part of me will always wish I had stayed, even for just a little while.

This post was inspired by the book Following Polly, as part of the From Left to Write book club. I was given the book for free, without obligation. I was also thinking, of course, of September 11. I remember so clearly my first visit back to NYC after the towers came down. The city will never be the same.

Hold them tight

I was up late last night watching the news coverage of the devastating fire in San Bruno. This morning, I turned the TV on as soon as I woke up. I got on Facebook and immediately heard reports from friends, and friends of friends, who live nearby. Thankfully, everyone I heard from was okay. One friend lives just 15 houses away from those that burned. He can’t get to his house, but can see it from a nearby vantage point. I’m guessing many of the houses that are still standing have suffered water damage from the drops made by planes and helicopters over the neighborhood.

What is it about tragedy that keeps us riveted to the television, radio and Internet? We are worried about those involved, but thankful it isn’t us. We watch out of concern, but also out of voyeurism. And now that I’m a mom of two little kids, any time there is some emergency on the news, I can’t help but imagine myself right there. For some reason I always think about when that plane landed on the Hudson River, all those people gathered on the wing waiting to be rescued. Would I have been able to get my kids out safely?

I imagined myself in one of those houses last night, my kids in their pajamas just getting ready for bed.  I pictured myself throwing them both into the car (literally, just throwing them into the back – seatbelts can be fastened later) and speeding away. Or tossing them from the window into the backyard, pulling the table over to get them up and over the back neighbor’s fence. Somehow, I would get them out.

I know there is a line between being prepared and making yourself crazy. There is certainly no real way to prepare for a gas line explosion and thankfully, that kind of thing is rare. But it is a reminder to check the earthquake kit, and have an emergency plan. Jeff and I need to talk about our meeting spots and who we would call to check in with if we couldn’t reach each other directly. If we’re both home, I get Jelly and he gets Moe. I need to remember to put spare shoes under the bed.

Do you have an emergency plan? Have you done a practice drill?

Click here to learn how to help the victims of the San Bruno explosion.

What’s up with all the peanuts?

When I first named this blog Anybody Want A Peanut?, Moe was just a few months old. I was a new mom with a young baby who was developing just as he was supposed to. I wrote some pieces here and there just to get my feet wet. I didn’t know at the time that this blog would turn into a blog about life with an autistic child, nor did I realize that I would be sharing it with so many people.

Most people, especially those who know me well, get the reference, but in case you don’t (gasp!), I chose the name of this blog from the famous rhyming scene in The Princess Bride. You remember: "No more rhymes now, I mean it!" "Anybody want a peanut?" It makes me smile just thinking about it. In case you either don’t know it (gasp!) or just want to watch it again, here it is:

The Princess Bride is my favorite movie. It is funny, romantic, clever, and I had a huge crush on Cary Elwes. Robin Wright is gorgeous in the movie. There’s really something for everyone. I’ve seen it countless times and have it pretty much memorized. I’m not one of those people who can quote lines from a lot of movies, but this movie has a special place in my heart. My brother loved it too, and I’m sure that is part of it.

If I were starting this blog today, I’d probably name it something a little more descriptive of its contents. And even if I stayed with The Princess Bride theme, I would choose different nicknames for the kids: Jelly should clearly be Buttercup and Moe could be the Dread Pirate Roberts. But I think it’s too late to change everything now.

Also, I feel compelled to add that even though “peanut” is a cute nickname for a kid, I don’t want anyone to think that I’m actually trying to give away one of my peanuts. I’m quite fond of them.

Wordless Wednesday

Taken with the Hipstamatic App for iPhone 4.

Before and After

A few months ago, in an attempt to reclaim some very precious space in our small house, I gathered up a bunch of baby toys that the kids had outgrown and threw them in a trash bag. I put them in Jelly’s closet, planning to donate them when I had a few more things to bring.

This weekend I sorted through a couple of drawers and now have enough to bring to the donation station. I got out the bag of baby toys and put it by the door to the garage so I would remember to bring it out to my car.

Not surprisingly, Moe found the bag and started rifling through it. He pulled out a rattle, and a feeling hit me like a shot.

When Moe was born, I was clueless. I had no idea how to care for, let alone entertain, a baby. I had registered for a few toys and got some things at my baby shower but when Moe was 3 or 4 months old, I realized I needed more. I loaded Moe into the car and headed to Babies R Us.

And that is when I found what call “the section.” Toys for little babies. Teethers, rattles, high chair toys, car seat toys. Everything I needed was right there. And there were other new moms there too. I remember I chatted with one mom and found out our kids were born on the exact same day. I bought a rattle. It’s nothing special but Moe liked it.

I remember exactly what I felt like on that day. I was happy to be out and about, finally getting my bearings as a new mom, learning how to navigate the day to day. I was still apprehensive about it all, coping with the sudden change in identity that comes with being a new parent. It was scary and exhilarating, sometimes lonely, but often joyful.

Some people measure time “before kids” and “after kids.” I do that, of course. But I also think of “before autism”, and after. Sometimes I’ll see something, like some of Moe’s clothes that I’ve saved for Jelly to wear, or a toy I remember him playing with as a little baby. Or Jelly will do something that Moe used to do – point to parts of her body or make animal sounds. And I get a terrible ache to go back and start over. Like somehow I could do something different. Change things. Set things back on the course I once thought was laid out in front of me, as clear as the array of baby toys on the shelves.

Cowboy and Wills and a Mother's Courage

When my son Moe was diagnosed with autism, my first instinct was to read. Get on the internet, get the books, and learn and much as I could. There are so many books on the treatment of autism, and I quickly became overwhelmed with all there was to learn. I couldn’t read them all. Then there were the memoirs, famous in autism circles: Thinking in Pictures: My Life with Autism, Look Me in the Eye: My Life with Asperger's, The Horse Boy: A Father's Quest to Heal His Son. I read a little bit of these, here and there, but I found it difficult. The grief was too new and it was hard to read about how challenging life could be, even for successful adults living with autism. It took me weeks to finally watch the Temple Grandin movie on HBO, though I knew it would be excellent. (It was, and now it's a big Emmy winner too!)

Earlier this summer, I was approached by the publisher of the book Cowboy and Wills: A Love Story, a memoir written by Monica Holloway, the mother of an autistic boy. I’d heard of the book long before, but could never bring myself to read it. But it has been over a year since Moe’s diagnosis, and it seemed time. So I asked if we could read it for the From Left To Write book club, and today we are writing about Cowboy and Wills.

The first thing I noticed as I read Cowboy and Wills, is that Wills is nothing like Moe. Where Wills is incredibly verbal, Moe has very few words. Where Wills is extremely sensitive to noise and commotion, Moe seeks light and sensory input. Where Wills has anxiety and obsessive compulsive tendencies, Moe eats mud. They say that when you’ve met one autistic child, you’ve met, well, one autistic child. Wills are Moe are very different kids.

The second thing I realized is that it didn’t matter. I felt for Wills and his struggles, and I understood Monica’s feelings of fear and isolation. I understood her willingness to do anything for Wills. In one scene, Wills bolts out of the front gate at a birthday party. She catches him but wonders what if she hadn’t been fast enough? She knows that "I would be fast enough…even in my eighties.” I've had the same fears. She wishes that “love cured autism.” Me too.

Warning: Spoiler Alert. If you don’t want to know how this book ends, stop reading here! Though frankly, I wish I'd had this information before I started the book.

Cowboy and Wills is a book about how a dog helped bring a boy out of his shell, helping him break through his autism. Cowboy, a golden retriever puppy, helped Wills with his confidence and with his ability to handle change. When Wills was not sure how to approach others, Cowboy would do it for him. When Wills was scared or upset, he could use the dog, saying that Cowboy was afraid or upset. Cowboy was ice-breaker, interpreter, and therapist all in one. But here is the thing nobody told me: the dog, a pet store purchase, died after only 3 years.

I was reading the end of the book, as Cowboy was getting sicker and sicker (why wasn't I warned??), when I received a call from Moe’s teacher at school, the magnificent Mrs. M. Moe had had an accident at school. My heart raced and I imagined myself racing to an emergency room somewhere. I imagined that he had run out of the gate, but that his teachers - wonderful people but not in love with Moe like I am - weren't fast enough. Moe was fine; he just fell on the playground and cut his lip, but it bled pretty badly and she wanted to let me know. He could stay the rest of the day. As I read on, crying a little out of relief but mostly because the dog was dying (are you kidding me??), the phone rang again and I had to quickly pull myself together. Moe’s teacher called back. He was pretty uncomfortable and fussy. Would I come get him? I hung up the phone and broke down in tears.

I guess I'm still pretty fragile. Perhaps I haven’t quite come to terms with Moe’s diagnosis. Hearing others’ stories will always be difficult, but I have come a long way. In the earliest days, I was afraid to involve myself in any support groups for fear that I’d hear too many upsetting stories. But I went to one parent meeting and found other people with humor, open ears and a lot of great advice. I was worried about what I’d see when Moe first entered school. What would the kids be like? But seeing the other kids like Moe is great. They laugh and play, and yes, occasionally have difficult times. And that is great too because then I know I’m not alone. And after reading Cowboy and Wills I realized that I need to read more autism stories. Wills has many challenges, but he’s a funny, smart boy. This book, though the dog dies (seriously??), is full of inspiration and hope. And we all can use a little dose of that.

I was given a copy of the book Cowboy and Wills free of charge by the publisher, with no obligation, as part of the From Left To Write book club.