This is our brains on vacation in Captiva

A happy, healthy, hopeful New Year to everyone! I am glad to know you, you've made my 2008 that much better.

The stuff kids say about special-needs kids

A conversation on the beach with two kids who were observing Max.

Kid #1: "Why doesn't he talk?"

Me: "He's not talking yet."

Kid #2: "Why don't you teach him?"

Me: "We do. He's just not fully talking yet.

Kid #1: "Even when he's a grownup, he won't talk?"

Me: "I hope he will talk."

Adult questions about Max, I can handle. But conversations with kids—especially ones who are about Max's age, as these two were—get to me. Inevitably, I start wondering what Max would have been like if he could talk, and that's not a good place to go.

Sometimes, when I'm with Max and we're around other kids who don't know him, I watch them watching him. They tend to blatantly stare, as kids do, and look perplexed. Once in a while a kid will ask "Is he a baby?" Max doesn't yet understand what they're saying about him, which is a mixed blessing.

Are kids sometimes harder to handle than adults for you, too?

Monday Morning Confessional: A word from Brad Pitt

Hi there. Ellen lined up some guest posters while she's on vacation, and I was psyched to help. I knew Ellen way back when, before Jen.

I haven't yet told anyone this, but Ellen dumped me. I still think about her.

You know, I missed her post about how many kids to have, but I say the more, the merrier! Six is great!

Ellen's really a babe. And smart. And cool. Angie's almost as amazing as she is.

I'm not sure why Ellen dumped me. I mean, come on, what does Dave have over me?

OK, later.

—Brad

Sablog (a "blog" by Sabrina, age 3)

What do you want to tell everyone?

Sabrina: "That I'm going to sleep."

And where are you?

Sabrina: "In Florida."

And what are you doing here?

Sabrina: "I'm, I'm up."

But what are you doing for fun?

Sabrina: "I'm coloring and I want to make up a story and I go in the pool and I have a lot of fun and I play a lot and I go to sleep and, and, and I go to different places and...that's all!"

What did you do on the beach?

Sabrina: "I played on the beach and made a sand castle and...that's all. Now can we go make up a story? I'm waiting...."

OK, let's tell everyone one more thing.

Sabrina: "I go to the beach!"

And let's tell everybody how Max likes his vacation.

Sabrina: "I don't know."

Well, is he eating lots of ice-cream?

Sabrina: "Yes."

And is he playing in the pool?

Sabrina: "Yes. And that's one more thing. Now, can you make up a story?"

OK. Tell everyone good night.

Sabrina: "Good night, I love you."

Welcome to our Florida vacation!

Sanibel Island and Captiva Island are exquisite in a very untouched, natural sort of way. We're at South Seas Island Resort, which has 330 acres. It is both spectacular and kid-friendly, a rare combination. Here's Sabrina, going for her morning jog.


The part of the resort we're staying at looks out on a harbor.


We spent most of the day hanging at one of the pools. Max splashed around like a maniac. He's getting very good at kicking, I hope he can swim someday.


He always likes to try on Dave's sunglasses...


...and my hat. I know, it's large. I get burned to a crisp if I'm not careful.


Sabrina wanted to know why everyone doesn't wear a bikini, like she does. She still has that adorable little-girl pot belly, and it looks great in a bikini. Why doesn't that work when you're a grownup?

Dave and I love to travel. We used to do lots more before we had kids, it's one thing I miss from pre-parenthood. We hiked in Patagonia, Chile, drove around Ireland, honeymooned in Bali. One of our favorite trips ever was a cruise we took in Alaska's Glacier Bay. We saw whales, dolphins, seals, puffins, black bears, you name it. If you ever go, choose a small cruise ship, not one of the biggies. The one we went on is out of business, but Cruise West is supposedly good.

What's your all-time favorite vacation?

5 things you never knew about Max

Baby Max.  Yum!

Today's guest post is by my sister, Judy, who is a blissfully blog-free human being, a genius accountant (and I'm not just saying that because she does our taxes), an amazing aunt to Max and Sabrina, and a caring sister. And did I mention she's a genius accountant?

Hi. Happy holidays! I have been reading the blog and all the comments every day and it has given me a greater insight into Max's life and Ellen's life, too. I go to visit Max every chance I get. He is my true love (yes, my husband knows about this and doesn't mind). Some stuff you may not have known about him:

1. He gives the best kisses.

2. He knows just how to push Sabrina's buttons—he may have trouble using his hands, but he is amazingly adept at pulling her hair.
 
3. His middle name is "Grant."

4. He is very smart and knows what he wants (and doesn't want). He wants: Ice-cream, toy trucks, playing in the snow. He doesn't want: Brushing his teeth, sleeping in his own bed, vitamins.

5. He can win his way into anyone's heart with his smile. OK, maybe you knew that.

—Judy

I need a pre-vacation vacation

Captiva Island, here we come!

So, wow, thanks again for all the smart musings yesterday on having a third child. Lots to think about during vacation, which starts Wednesday. The plane ride to Florida will probably make me regret ever having kids in the first place. I'll be blogging from there, and I also have some exciting guest posters lined up, including Brad Pitt, Hillary Clinton and Mother Teresa, speaking for the first time from the great beyond.

I am in that frenzied stage right before you go away when there are a bazillion things to do and more just seem to crop up every minute. Like, at 7 a.m., we are refinancing our mortgage (check out those rates, people)! I am making them come to the house so we can sign papers here, don't ask me how I bullied them into that, but I did.

I still have all those little-but-crucial things to pack, from Max's seizure medication to the DVD recharger plugs. Now, this is not a blog where you will find household/domestic tips (if you ever do see how-tos for cooking or housecleaning, call the police immediately, because it means someone has kidnapped me and taken over my blog). But I am pretty proud of myself for this packing idea I had a few years ago: When I put away the kids' summer stuff, I shove it into a suitcase so we're good to go if we head someplace warm in the winter. Take that, Real Simple.

Monday Morning Confessional: Are you done having kids?

This Arkansas couple, The Duggars, has 18 kids (their latest is just a few days old). Kind of makes two seem like cake.

Recently, there was a lively discussion about third kids on a mom e-loop I belong to, something Dave and I have been pondering for years. Some moms talked about how two kids are manageable, but with three everything is harder—traveling, eating out, finding a sitter, affording them all. One mom who'd had two kids followed by (surprise!) twins said she thought it would put them over the edge, but the twins have been great for their family. Another undecided mom mentioned that one thing she can't shake from her head is the number of older people who have told her they wish they'd had more children. Then there was a mom who told of meeting a woman with four kids. She asked how she knew she'd wanted a fourth, and the woman answered, "When I thought of my family portrait on the mantle, someone was missing."

On most days, I'm plenty happy with two kids, and plenty busy. I worry that having a third would detract from the attention I give Max, and he needs as much of my attention as he can get. And I worry that three is tempting fate. Max had a stroke at birth, Sabrina was born perfectly OK. Could we have another healthy child? But, then. I love children. A third could be beneficial for Max in all the ways that Sabrina has been—he sees her doing stuff and he's motivated to do it (though I wish she hadn't taught him to pour bubbles into the coffeemaker). A third child would also be around to help Sabrina look after Max someday when Dave and I are gone. Life would be hectic, sure, but we'd settle into some sort of routine, just as we did with one kid, and then two. Our latest thinking: ????????? And furthermore, ????????????

So, I ask: Are you done having kids? Why—or why not?

—Ellen

Sablog (a "blog" by Sabrina, age 3)

So, what do you want to tell everyone today?

Sabrina: "I'm doing my puzzle."

And where are we going on Wednesday?

Sabrina: "Ummmmmmmm.....to Florida!"

What are you going to do there?

Sabrina: "We're going to, to go on the airplane."

What do you do in Florida?

Sabrina: "Um, I don't know."

Are you going to play in the sand on the beach?

Sabrina: "Yes! Because it's hot there!"

How hot?

Sabrina: "Warm and warm and warm and warmer and warmer!"

Are you going to share your toys with Max?

Sabrina: "Yes."

[The voice of reason] Are you really going to share your toys with Max?

Sabrina: "Yes! Because I'm a big girl!"

What do you want everyone to know about Max?

Sabrina: "He goes to school! And camp!"

How much do you love him?

Sabrina: "THIS MUCH!!!!!!"

The blog diet (or, how I lost nine pounds doing this thing)

Really interesting comments yesterday on the post about doctors. I have been finding blogging very therapeutic; turns out it's also good for my waistline. I went for my annual today, and I have lost nine pounds since last year. I'm pretty sure I have blogging to thank for that. Used to be that I'd come home, put the kids to sleep, eat dinner, then keep snacking while I did work, watched TV or read. Now I have dinner (usually some frozen meal), do some work, grab a cup of water and hit my computer. Basic truth: You cannot simultaneously shovel food into your mouth and type or Web surf.

I still have baby weight to lose. After Max was born, I wasn't taking good care of myself—life was all about him, all the time. I didn't lose a bunch of pounds I gained from that pregnancy, then I had Sabrina two years later, kept on some of that padding and that's how it goes. I think the surprise nine-pound loss may be the kick in the butt I need to keep going. Actually, that's not my problem area, it's from my stomach up as you may recall from the post-baby-body post I did.

Yeah, I know, exercise is key. The best way to get it into my day is to walk to the train and then to work (about 20 or so minutes total) and do the same on the way home. Dave also just bought the Wii Fit system, which we plan on putting to good use. He created avatars (on-screen personas) for both of us. After we typed in our weight, both our avatars got rounder. That was sort of the last straw. Who wants a chubby avatar?

How about you—what are you doing to stay in shape? Or not doing?!

Good doctors for special-needs kids vs. bad ones

You know those Wordless Wednesday posts other blogs do? Well, here at To The Max it's Word-Filled Wednesday, cause I've got a lot to say. Thanks again to everyone for the reassuring messages about Tuesday's seizure scare. I was sorry to hear that some of your kids have been having them.

On the train to work, I called the nurse at Max's school and asked her to describe what she was seeing that had concerned her. Turns out it was this weird movement Max occasionally does in which he grimaces, stiffens and raises his arms, all at once. The whole thing happens in maybe two seconds, then he relaxes and he's back to usual Max.

I told the nurse that he has been doing this for years, and that I had pointed it out to the neurologist when I first saw it. And then I explained why sending home forms titled "ASSESSMENT OF SEIZURE ACTIVITY" can be very unnerving to a parent and that going forward, I would like a call. Later on, I spoke with our neuro, whom I absolutely adore. Dr. C is smart, nice, sane, funny, down-to-earth. Every mom of a child with challenges needs a Dr. C in her life. I told him what had happened and he basically said that at worst, what I was seeing is a tic but because Max is wired differently than other kids, what might just be a shoulder shrug for a typical child would involve Max's shoulders along with his arms and mouth. (Interestingly, studies show that one out of every six boys in elementary school has tics.) There is no kind of seizure that fits the description of what Max has been doing.

Dr. C is amazing. In contrast, I think back to this one doctor I visited when Max was three months old. He was a neonatologist, someone who specializes in the care of newborns. In the course of examining Max, this doctor told me that the only other moms he'd seen whose babies had suffered strokes were crack moms (yes, he said that). And then, when he finished looking Max over, he told me that Max's limbs were very stiff. He told me that a bilateral stroke was a serious thing (no shit, Sherlock). And then he said "His future looks ominous." That's when I started crying. He said, "Hasn't anyone told you that yet?" I couldn't even respond, I was so despondent.

I ended up seeing the social worker in his office afterward. And as I sat there blubbering my heart out, I got good and mad. I told her that he had no right to use a word like "ominous," that no doctor should ever use that word, that babies' brains are plastic, that Max had potential. And if I didn't have HOPE, what did I have? I walked out of there and never came back.

I do have fantasies about marching back into his office with my walking, communicative, bright, personable Max and saying "SEE?!" But a doctor like that, well, he'd just look at Max and say: "He's not talking, and his limbs are still tight." Who needs that?

I'm curious, tell me about a doctor you've taken your child to who you adore—and a doctor who you wish you'd never met.

Scared of seizures

Ah, how much can change in a day. Yesterday, it was 65 degrees and Max seemed fine. Today, it is a snowy winter wonderland and I am a little panicky about the possibility that Max is having seizures. I fear them. No, make that, I am terrified of them. Max had seizures at birth and a grand mal at one and a half, and the experience was just as traumatic as those two weeks at the NICU after he was born.

When I was at Max's school last Friday for his birthday, a couple of aides mentioned that they noticed he sometimes stared off into space. I've seen Max do this, but I can snap him out of it by saying "Max!" The underlying fear here is absence seizures.


Here's a video of a girl having absence seizures. They're subtle, but watch how she spaces out and her repetitive jaw movements. I first saw this video over at Fighting Monsters With Rubber Swords; watching it was worse than seeing a horror movie.

The second I left the school, I called the neurologist. Who got back to me and confirmed that they weren't absence seizures if we were able to break him out of the trance by calling his name, by touching him, by giving him a new visual target.

So, I shot off an e-mail to Max's teachers, therapists and the school nurse mentioning the above and saying they should try to break his stare if they see him doing it. Tonight, I came home from a work holiday party to find a form in Max's school book from the nurse. The top of the form says, in all caps, "ASSESSMENT OF SEIZURE ACTIVITY." My heart skipped a few beats. I read down the checklist. She noted he was staring, his arms and hands would stiffen, and that in the "post-seizure state" he would spastically move his arms. And that "this is worth reporting to the neurologist." Nowhere did it mention whether she'd tried to break his stare. Which is why I am sitting here at 12:10 a.m. and worrying.

I know this nurse means well. Yet I am agitated that this Form Whose Name Shall Not Be Spoken was sent home to me, no phone call. Even if she is just making observations and not saying it definitely is seizure activity (and she just chose to make her notes on an unfortunately named form), I tend to be very, very literal about this sort of thing. I also know that I am agitated because I am scared that what she is saying is true. It seems incomprehensible that my sunny little boy could be having seizures in front of my eyes.

I am going to sleep now, it's what I need to do.

How much patience have you got?

I hate lines. And yet, I drove to the mall tonight to get some holiday shopping done. The dashboard said the temperature outside was 65 degrees. We live in the Northeast. It's December 15. NOT normal.

The mall had people milling around but it wasn't exactly bustling. And it's just 10 days till Christmas. NOT normal.

Despite that, I stood online for 15 minutes at one department store (Macy's!) to check out. TOTALLY normal. Subprime mortgage crisis aside, could ridiculously slow cashiers be one reason for the crappy economy?

Ah, patience. You'd think that when you have a kid with special needs, you might end up with more of it. And the thing is, for Max, I do have all the patience in the world. I never, ever get frustrated with him for not being able to do something. I will go over the same thing—numbers, colors, the name of the city we live in—again and again so he absorbs it. I have learned to toss the parenting books and ask Babycenter to quit sending me weekly e-mails about milestones, and just pay attention to what Max is doing, rather than what he isn't.

I also have a goodly amount of patience for my job, which I adore. But in all other areas of life—like waiting on any line or waiting for something to load on this computer—I have very little patience. I have so much to DO in general that I have minus-zero time to wait around for trivial things.

Know what I mean?

Monday Morning Confessional: I need a co-pilot

Before I had these two yumsters, I adored being home alone. My favorite thing to do was to rent a bunch of old movies, nuke some popcorn and watch them in a row. These days, I almost never have our place to myself, which I've gotten used to. What's unnerving is when it's just me and the kids for an extended period of time, like now; Dave's away on a business trip for a few days.

At first, I love it; Sunday morning, the three of us woke up (in my bed, of course), made scrambled eggs with cheddar cheese, and pretended we were firemen and princesses and monsters. But as the day went on, I got a little uneasy. I have a not-so-repressed fear that Max could have a seizure (even though he's on medication to prevent them) and I'll have to face the ambulance and hospital alone. And, OK, I'll admit that I'm so used to Dave's help that I'm always surprised by how much work it is to take care of the kids without him around. I don't know how single moms do it. One I've long admired: Chrissy over at Storked!, who makes it look easy and who never loses her sense of humor. I also feel deeply for all the parents out there going it alone while their spouses serve in Iraq.

How do you feel about being with your child/children when your significant other is away?

Does what you name your kids shape their personality?

Max being his usually cheerful self


Sabrina, ready to take on the world (and show it who's boss)

There's an interesting blog at the New York Times site today about whether the names you choose for your kids shapes the people they become. It doesn't really answer the question, but it got me thinking about my kids' names, which I adore.

We always knew Max was going to be a Max, he's named after my grandma Minnie. But with Sabrina, there was some debate. I loved Sabrina from the get-go, Dave was more fond of Sophie or Sophia which I thought were getting too popular (BTW, today there are three Sophies in our neighborhood). Now neither of us can picture her as anything but a Sabrina. To me, the name is all about being feisty, spirited, quirky and and maybe a bit of a smart-ass. The name "Max" signifies someone who's cool, friendly, strong. Both kids really are their names.

Do you feel the same about your kids' names?

Helping our kids vs. enabling them

Sabrina and Max at his touch-screen computer. She always wants to do stuff for him.

Max is in love with the remote-control car we got him for his birthday (it was the Parents one from my list of developmental toys). He especially loves throwing it down the stairs from over the guard-rail on the second floor, making me think the car is not long for this world.

Max is having trouble pressing the button to make it go. After we opened it (I was so excited he tore the wrapping paper by himself), he handed over the control to Sabrina because he knows she can easily do it and he can't. This always breaks my heart a little bit. Tonight, he only wanted me to push the button.

It's a tough line to walk: doing stuff for Max versus letting him do things for himself. Max has a lot of challenges using his hands. He never developed that pincer grasp (which enables you to pick up an object between your thumb and forefinger) and he can't point, which makes it hard for him to press things. With enough determination, he usually figures out a way. Sometimes I step in because I see him getting frustrated. Sabrina is always glad to lend a hand. "Max needs help!" she says. This outpouring of goodwill is partly driven by love, partly driven by her desire to get her mitts on his toys.

As for the remote control, Max and I had a stand-off when I refused to keep pressing the button for him. Now he's in bed, sleeping happily next to the car. Tomorrow, I'll again try to coax him into pressing the button. Nothing like a pushy parent, right?

—Ellen

Any singers in the house?

This Friday, I'm bringing in cupcakes to Max's school to celebrate his birthday. I've also volunteered to lead a holiday sing-a-long, and will no doubt be impressing kids and teachers alike with my vocal range as I belt out "Jingle Bells" and "Rudolph The Red-Nosed Reindeer." Seriously, I like to sing, I was in choir in grade school and college. So it's fun when I get to do it with kids. My fantasy career: being a singer, of the Norah Jones crooner variety.


Dave took me to see her in concert for my birthday last year, she sounds absolutely amazing live.


I've also fantasized about being Laurie Berkner, who does really boppy, creative songs for kids.


I've never once fantasized about being Willie Nelson, FYI.

What's your fantasy career?

A birthday boy and his dad

Today, I'm celebrating six years of Max—and six years of Daddy. Because if it weren't for Dave, Max wouldn't be doing anywhere near as well as he is. Dave's been an amazing father since Day One. He was first to hold Max (I was drugged out from the C-section) and I remember looking up in a haze and seeing Dave holding this little bundle so gingerly and staring wondrously, as if he couldn't believe that, yes, I'd had a baby in my belly.

After we got home from the two weeks in the NICU (things went disastrously wrong after the first 24 hours, someday soon I'll tell you how we found out Max had a stroke), I was depressed. I was mourning what had happened to Max, and I felt sick with worry about his future. Oh, and I hated breastfeeding, but I was determined to give Max anything I could. Then one night, I hit rock bottom and I couldn't even hold Max. All I wanted to do was lie in bed and sob. Dave came into the bedroom with Max and tried to talk to me. I said something like, "My worst nightmare actually happened." And Dave said, and these words I recall exactly, "Honey, look at him. Does he look like a nightmare? He's beautiful."

That is my sweet, loving, very sane husband, Dave. Over the years, he has done everything for Max—squeezed himself into a narrow glass tube with him for hyperbaric oxygen therapy, woken up at 7:00 on Saturday mornings to take Max to horseback riding therapy, fed him, changed him, bathed him, you name it. "Hands-on" doesn't begin to describe Dave. It's more like heart-on, soul-on, entire-being-on.

Happy, happy birthday, Max. I am in awe of how far you have come, and grateful that you've never stopped being determined, bright and beyond adorable. Dave, I love you. And no more complaining that I never put pictures of you on the blog. xoxoxo

PDA (Parental Displays of Affection): How mushy are you with the kids?

I cannot stop kissing my kids. I do it all the time: When I wake them, when I pick them up from the car seat, when I wipe their mouths after a meal, when we're on the floor playing, when they do something I think is cute (which is approximately every four minutes). Kisses on the lips, the cheeks, their hair, their limbs. When they were babies, I used to literally kiss their chubby butts.


Kiss-iness runs in the family; Max planted one on his new baby sis whenever he had the chance.

The only better thing than giving kisses is, of course, getting them. Max is always ready and willing. He is all about these open-mouthed, slurpy kisses that linger on your cheek for a good five minutes if you don't wipe them away, which I never do. That first week after he was born, when he was in the NICU and not allowed out of the incubator, I'd lean down to stare at him and leave lip prints on the plastic. Who knows, maybe I am making up for lost time. Sabrina is stingy with her kisses; I practically have to beg her for them. She doles them out as if she were rationing bread to the starving masses.

How kissy are you with your kids?

Monday Morning Confessional: Germs don't bug me

This weekend we hung out with friends and their cutetastic 11-month-old twins. At one point, I noticed Max chewing on Cheerios one of the babies had already slobbered on and I let him keep going. I have a high tolerance for cooties, especially when Max is actually feeding himself. (Linda over at All & Sundry just did a great post about dealing with sick kids and, even more trouble, sick husbands.)

When Max was a tot, he didn't go through that stage when kids shove every little thing into their mouths just for the hell of it. He's orally sensitive, which is common among children who have cerebral palsy. So Dave and I gave him total freedom to explore the world in other ways, even if it meant letting him crawl on the mall floor. The first time Max ever pulled himself up to a stand—a tremendous milestone for him—was on a toilet seat in our first-floor bathroom. After that, he and the toilet seat were BFF's. (If you feel like chucking your bottle of Purell at me right about now, I understand.)

Something snapped after Max was born. He had a bilateral stroke; I had bigger issues to worry about than some measly germs. I did the usual baby-sanitizing things, I just didn't obsess, and once he was out of infancy I obsessed even less. We're lucky that Max and Sabrina aren't prone to getting sick—if they were, I'd probably feel differently.

How germphobic are you?

My secret to sane weekends

So, not that this idea is Einstein-level genius, but it's enabled me to have fun, relaxed weekends with the family: WE DON'T DO CHORES. I just finish up stuff the best I can on weekdays after the kids go to sleep, even if it means tossing in a load of laundry at midnight. This way, we get to have our weekends all to ourselves.


Max's idea of weekend fun: Beer, and lots of it. Don't be alarmed, we didn't let him drink till he was 5.


Sabrina's idea of weekend fun: Wear Mommy's '80s headband from high school and get pushover Daddy to buy the biggest chocolate cupcake in the whole wide world.

I started no-chore weekends before we had kids. I figured, I work my ass off during the weekdays, what's the big deal with staying up a couple more hours to get stuff done? (I also happen to be a night owl, if you couldn't tell from the occasional post-midnight post like this one). Obviously, sometimes we have to run to the dry cleaner's or pick up something at the supermarket. And sometimes, I can't get it all done during the weekdays—but unless it's dire, I save it till Monday. For now, we remain duty-free on weekends.

Smart TV shows for kids

First off, I really appreciated the feedback on the post about the labels we put on our kids. Mel and Billie are so right about mentioning the person first and saying "I have a kid with special needs" instead of "a special needs kid." I will remember that. The article Dianne linked to in her comment was dead-on, everyone should check it out.

I bumped into a neighbor of mine who works over at PBS and she told me some happy news: They're doing a new version of The Electric Company, starting in January. I took a look at the sneak preview, it doesn't seem anything like the old version (which ran from 1971 to 1977) but it does seem creative. Do any of you remember this program? I learned a lot about spelling from it, especially from those two talking silhouettes (check out this YouTube snippet). Come to think of it, I would love to introduce my kids to Mr. Rogers. It's a beautiful day in the neighborhood!

Generally, I let my kids watch Sesame Street, Blue's Clues, Mickey Mouse Clubhouse and Jack's Big Music Show (which gets amazing musical guests) on TV. Max is also happy to sit around watching NASCAR and any show involving cars or trucks. He enjoys cooking shows, too, which may be wishful thinking given my lack of cooking. Which programs do you let your kids watch? And which ones would you never, ever, not in a million years let them watch? Spongebob Squarepants, I'm talking to you.

Labels: "Special needs" vs. "disabled" vs. ... what???

Came home from work ravenous, raided the pan of lasagna the babysitter had made the kids. There's a reason I haven't yet mentioned this blog to her!

On the train tonight, I got to talking with another mom and I told her that I had a "special-needs kid." Every single time I use that term, I flinch inside; it just sounds so...stiff. Still, it's less harsh than the reality of "disabled" and "handicapped" and less dorky than "differently-abled." On occasion I'll say "I have a child with some challenges" but that often triggers a flood of questions I don't always feel like answering (and for reasons I can't explain, to me "a child with challenges" sounds like I have a child who tends to light small fires in the living room or something).

Why isn't there a more cool way to describe our kids?! Like, um, "disabledster." OK, no, not that. Or "specialista" (though that's probably too femme for boys.) Or...got any good ideas? Which term do you tend to use, if at all?

A crazy story about the Web and a girl's suicide

A year or so ago, I read a disturbing article in The New Yorker about a 13-year-old who hung herself in her bedroom because she'd been spurned by a boy she'd met on MySpace. Turned out that the "boy" was really a neighborhood Mom who had made up an online persona, along with her teen daughter.

Now that mom has been convicted on three misdemeanor accounts.

This is just horribly insane. Can you even imagine being the parents of this poor teen who killed herself because of a Web hoax?

Usually, not a day goes by when I don't think about how amazing the Web is, how it's enriched so many people's lives, how much I adore blogging. But stories like this remind me of how dangerous the Internet can be, in ways that defy belief.

I have yet to encounter Crazy People in Cyberspace, although once some unknown creep swiped my credit-card info from Web transactions I'd made and went on a shopping spree. Sometimes, I worry about the fact that I put my kids' photos online, but when I decided to do this blog I wanted to do it openly.

Have you heard of any crazy Internet stories?

There are three kinds of moms in this world

Well, that's basically how you see it if you're the mom of a special-needs kid.

Type 1: The mom with a special-needs kid.
Type 2: The mom with a typically-developing kid who notices that you have a special-needs child and either acts normally and/or tries to get her child to engage with yours.
Type 3: The mom who notices that your child is a special-needs kid and when your child tries to interact with hers, she suddenly hovers nervously and/or whisks her precious little one away.


Does he look like a menace to society?

Mostly, I've met Type 2 moms but the other day I encountered a Type 3 at Borders. Max was running around the kids' book department; another little boy overheard me saying "Max, please come here!" and asked his mother "Who's Max?" When Max came over I told him "Go on, say hello" and he parked himself in front of this child and said "Hi!" Which is awesome, we love when Max articulates a "hi" to anyone. The little boy said "Hello" back, and then Max just stood there and smiled, and drooled a bit, and reached over and patted him on the head. That is when it dawned on the mother that Max is a special-needs kid, at which point she said "OK, Sam! Let's keep looking at books!" and sort of hustled him away. You know, I'd understand if Max had hit this kid or shoved him; I would pull Max or Sabrina away from any kid that did that. Except Max didn't. He was just being friendly.

This sort of thing used to make feel bad. But now I think "Too bad her kid is missing out on meeting Max." And "Too bad her kid's not going to grow up understanding that there are all kinds of people in this world." And, "Dumb-ass."

Monday Morning Confessional: space-cadet Mommy moments

One thing you should know about me is that I am a relatively organized, on-top-of-it person. I mean, I seriously considered joining a twittermoms group called The Organized Mom until I read a post on organizing shoes and got scared off (I am sure there are hordes of people out there who need to sharpen their footwear organizational skills, but I just cannot go there).

Anyway, I got a message from my bank last night, I do all of my banking online (try it if you haven't yet, it saves time and postage—about $50 a year, I've read—and it's good for Mom Earth). The message said I didn't have enough in my account to cover a credit-card payment. This was strange, because I knew I had enough. So I logged on. I owed $2816 but I'd put in for a payment of $28,166. Oopsie. Note to self: Not a good idea to pay bills and talk on the phone at the same time.

What "duh!" thing have you done lately?