Thursday, September 30, 2010

Sometimes, I get a little overly protective

Max now has his very own car wash—well, at least the toy version, given that buying him a real one is pretty much not in our budget. Mindy, a reader who's heard tell of his obsession, e-mailed me about the above, the Alex Car Wash Floating Tub Playcenter. I ran, not walked, to Amazon to order it. I knew the handle might be a little hard for him to use, but given that his iPad and Proloquo2Go app have basically taught him to use his pointer finger, I thought this could encourage him to turn things. It arrived last night and I left it for Max at his place at the table to surprise him.

Sabrina saw it first this morning and came zooming upstairs. "I want to open Max's toy!" she said. She walked over to our bed, where Max was watching Phineas and Ferb. "Maaaa-aaaaax," she said in that special sing-song voice she reserves for putting one over on him. "Can I open your new car wash?"

Max wasn't quite sure what to make of the fact that he had a car wash to open.

I jumped right in: "Max, we got you a car wash toy! And no, Sabrina, you can't open it—it's for Max." I know it's a common instinct for siblings to want each other's toys but still, I was a little peeved with Sabrina. She knows how much he loves all things car wash.

It sometimes takes me by surprise me how protective I am of Max. Because of his challenges with talking, I am his voice, his protector, his savior. I should patent the evil stare I give to people when they blatantly stare at him—The Death Glare. So, yeah, I'm even overly protective when it comes to his little sis, my own flesh and blood. One very conniving flesh and blood.

I'm not alone in these feelings. "No, no, no, Sabrina," said our babysitter, speaking even more firmly than I did. "You know that's for Max! He's going to open it! End of story!"

Even Dave (aka Mushball Dad) had this to offer: "Sweetie, Mommy got that for Max!"

Sadly, I had to run and catch the train to work before I could see what went down with the car wash. But I called home and Max was happily playing with it—and, yes, he'd given Sabrina a turn.

This overprotection thing: I don't think it's uncommon among parents of kids with special powers.

Wednesday, September 29, 2010

I faked it at Mary Kay

I went to a Mary Kay party tonight, my first one. A very cool local mom is a sales consultant, she has a kid with special powers, and I wanted to hang with her.

The thing is, I barely wear any makeup. Sheer face powder and lipstick, that's it, and blush on occasion (actually, it's this Benefit pink face powder) when I'm sleep deprived and look a little like a dead person.
I used to wear mascara, but after Max was born I quit because I cried incessantly that first year of his life. I can't stand waterproof mascara; my lashes always fall out when I remove it and I don't have many lashes to spare.

The au naturale thing is genetic; my mom is the most spartan person ever. She'd never even had a manicure until she was seventysomething, when my sister got married. She's big on lipstick, however. Her first words to me whenever she sees me are, "You should put some lipstick on." I could show up at her house with leprosy and she'd say, "You should put some lipstick on."

Tonight, when I walked into the Mary Kay party, the ladies (and they were definitely ladies) were slathering on hand cream and they offered me some. "Call me weird, I don't like hand cream," I said, their first sign of what a Mary Kay wallflower they were dealing with.

I learned about the skincare stuff, which seemed creamy and nice and all but my skin is pretty low-maintenance. If I were inventing Mary Kay products, I'd create a skincare line called "Better Than..."—"Better Than Sleep," "Better Than a Tropical Vacation," "Better Than Being Gisele." Than I could make the big bucks and retire and get lots of sleep and I'd never again look like a zombie with pink face powder. But I kept my mouth shut because I wouldn't want to put my friend out of business. She's really sweet.

When she gushed about this one anti-wrinkle cream all the reps said they'd want if they were stuck on a desert island, I pointed out, "But nobody would be there to see their wrinkles!" at which point I am sure she was sorry she'd invited me. Then I tried on a really pretty lip gloss (which I ordered) and she put some eyeshadow on one of my eyes, so I could see the contrast between them, only I didn't. I've never understood the purpose of eyeshadow. Then I had to get home to relieve the babysitter and show her my eye.

I decided to quiz Dave when he came home to see if he might appreciate me in more makeup.

Me: "Guess what kind of makeup I wear!"
Dave: "Lipstick! That's it."
Me: "What color lipstick?"
Dave: "You wear pink."
Me: "Do you want me to wear more makeup or less?"
Dave: "Less."
Me: "So you want me to wear no makeup at all?"
Dave: "How about nail polish?"
Me: "What color?"
Dave: "French tip!"
Me: "You know what a French manicure is?"
Dave: "Of course I know! Isn't it like two colors?"
Me: "What colors?"
Dave: "It's peach and white. Am I right?"
Me: "Yes! How do you know that?
Dave: "I don't know. I just know."

I love him.

So, what makeup do you wear every day?


From Type A to Type DD: On loving our real mom bodies

I stared at a lot of butts at the Type-A Mom Conference. And boobs. And hips and bellies and legs. It happens every time I go to these blog conferences and I'm in the company of hundreds of women: I talk a lot, I learn a lot, and I am awed by the variety of body shapes and sizes a lot.

In New York, the vast majority of moms are Size Perfect. Some are naturally that way, some work at it. Me: not working at it. I am basically comfortable in my skin, but at times I get a little self-conscious about my size 12 body (10 when the cut is kind). So I wear Spanx on occasion. I'll slip on a sweater over a sleeveless dress. I walk down the street sucking in my post-baby gut (I'm allowed to use the words "post-baby" until the kids are in their twenties, right?).

Then I come to these conferences and I see a glorious gamut of bodies—curvy, hippy, busty, bitty, tall-y, short-y. I don't think twice about my shape because there's such a heartening variety of them. And I most definitely don't hold in my stomach because I'm too busy laughing or, as happened this weekend, downing Little Debbie Oatmeal Pies (a sponsor).

I think I may have unintentionally offended a few friends when I asked to include them in my post on real bodies, as if it were code for "Would you like to be in my roundup of love-handled mommies?" But, really, I just wanted to show that gorgeous comes in all shapes and sizes.

Maricris from ZensibleMama

Lisa from Mommyality and
Megan from Sweet Sadie Marie

Leticia from Tech Savy Mama

Valerie from Charmed Valerie (at an '80s par-tay)

Jill from Musings From Me

Me with Julia Roberts from Support For Special Needs

Megan from Velveteen Mind

Laura from ChambanaMoms

Carol from NYCityMama with Ron from
Clark Kent's Lunchbox (dad blogger and honorary mom body, though he probably doesn't wear Spanx).

How about you: Do you compare your body to other moms'? What's your relationship with your body—friend or foe? Anyone got a Little Debbie Oatmeal Pie?

Tuesday, September 28, 2010

The Max hockey jersey cure (thanks, NJ Devils)

I went to sleep filled with guilt. Then Max trotted into our bedroom at 4 am, and I plopped him down next to me. He gave me a little wave and said, "Hi!"

Heart-melt moment #1.

Sabrina woke me up at 6:45 with the rallying cry of, "MOMMY! I DIDN'T MAKE PEE PEE IN MY UNDERWEAR!!!" Then she shouted, charmingly, "DADDY!!! GET UP OR I'LL MISS MY BUS!!!" Clearly, we need to clue her in to using a morning voice. Meanwhile, Max spotted Dave's NJ Devils jersey lying on a bench in our bedroom. He gestured at it, and Dave slipped it on.

"AH-EEEE" Max said, the first time we've ever heard him say "hockey."

Heart-melt moment #2.

"You want to go to a hockey game?" Dave asked.

"YEAH!!!" said Max.

"OK!" said Dave.

Some of you may not appreciate the team, but you've just gotta love the spirit.

Then Max wanted to get off the bed and he started pretending he was moving around a hockey stick (he'd tried it at that family camp weekend). The jersey was so long on him it reached the floor.

"Max, you look like you're wearing a dress!" I said.

"YEAH!!!" said Max. Ooooooooo-kay.

"Max, you want to play hockey?" Dave asked.

"YEAH!!!" said Max.

Heart-melt moment #3.

We're going to try to make both happen. And get Max a kid-size jersey. And teach him to say "Go, Devils!"

I went to work with a pretty happy heart.

A full-blown case of mom guilt

An hour ago I got home from that blog conference, gave Dave a quick peck and ran up the stairs like a madwoman. Then I tiptoed into Max's bedroom and kissed him and kissed him as he lay sleeping. He looked like he had somehow gotten older in the four days I've been away (doesn't he?). I stroked his forehead; he didn't feel like he had a fever, which was a huge relief.

This afternoon, just as my cab got to the airport in Asheville, my cell phone rang.

"Hi, Ellen, it's Nurse Dawn," said the nurse from Max's school.

Every single time she calls, I think she's going to tell me Max had a seizure.

"Is it an emergency?" I asked.

"No. But Max has a temperature of 101," she answered. "Can we give him medication?"

That's not quite an emergency, but it's no small thing. Years ago, Max had a grand mal seizure triggered by a fever; it lasted for an hour. Whenever his fever goes over 100, we immediately give him a dose of both Children's Tylenol and Advil or Motrin.

I said it was OK to give him medication. I called Dave to make sure we had enough Tylenol and Advil at home, and Dave said he was going to get Max and take him to the doctor. Then I hung up and almost cried right there in front of the cab driver.

The guilt had been slowly creeping up on me as the weekend went by. Right after I spoke with Max on Friday and he said those two words so clearly, I was on a high. But by the next day, I was missing him and Sabrina badly. By Sunday, I was aching to see them. Then today, my flight got cancelled. I wasn't even going to make it home on time to see the kids before they went to sleep. I got booked onto another one, but there were delays and guilt, guilt, guilt. There I was, at a conference because of the blog I write about my kid, and he was home sick.

Dave called from the doctor's office. "I'm in the waiting room. Max just fell asleep on my chest," he said.

Cue the music from the Psycho shower scene where Janet Leigh gets stabbed through the curtain: That's pretty much how I felt. The doctor said Max had a bad viral infection that was going around.

The day's fun culminated in the flight attendant not being able to open the plane door when we got to the gate (though that wasn't as crazy as my friend Leticia's flight; they had to kick off four people because the plane was too heavy).

Mostly, I'm rational about taking time for myself, which I think I deserve and need. I haven't had a bad case of the guilts since the early years with Max. After I returned to work when he was born, I'd feel absolutely evil sitting at work and editing pieces on hairstyles and relationships and Dos & Dont's while the babysitter sat through therapy sessions with Max. But I had Fridays at home with him, and as Max progressed, the baaaaad-baaaaad-Mommy vibes subsided.

This weekend, though, they returned full force. Of course, I was at a mom blogger conference; there was lots of guilt to go around. I went out to dinner with one mom who was still shaken by a mishap at her little boy's daycare earlier in the day. He'd wet his pants and had no clothes to change into since she'd forgotten to bring in an extra set; her husband couldn't get over there.

Still, I felt like I was dealing with a whole other kind of guilt. A kind that I don't feel about leaving Sabrina behind. But Max? He's still so dependent on me for so many things. He really, really needs me. Especially when he's sick.

It's late. I'm tired. But I've got a raging case of guilt keeping me up.

Monday, September 27, 2010

On not getting my hopes up too high

I'm still here at the Type-A Mom Conference tonight, headed home tomorrow morning. I am pretty sure 99.9% of the reason Dave has been sending me photos like the one above is to show proof that the kids have not watched TV the entire time I've been away. Happily, he took them out pumpkin picking today. Although I get the distinct feeling that Max has been wearing that same shirt for three days in a row and why is Sabrina still in shorts and Crocs in 60-degree weather? OK, I'd better shut my trap right now or no more blog conferences for me, aka The Completely Ungrateful Wife.

I'm antsy about getting home because I can't wait to hear what else Max has to say, following his "getting dressed" amazing feat of enunciation. Dave says he's been babbling lots, though he hasn't heard any specific new words. Me, I'm trying hard to not hope too much. The way these turning points have gone in the past is that Max may do something once, and then not do it again for a long while.

If I let myself get overly excited about these things, my heart ends up crashing hard.

So as ecstatic as I am when Max has a first, I enjoy the moment...and then I try so hard to not anticipate the next time he'll do it. It can be a little torturous, this waiting thing. Because when your child does something you have been aching for him to do for years and years, you want that second time to come around fast.

I'll bet you know what I mean.

Friday, September 24, 2010

My two new favorite words

Tonight, I'm here at the Type A Mom Conference doing the anti-social media thing. There's a talent show happening downstairs but I'm holed up in my room with a burger and sweet potato fries, I have a mask on my face, and in an hour I'm planning to get a good night's sleep for the first time in I dunno. I may have just officially confirmed that I am getting old and boring.

I called home before as I was walking around Asheville's downtown, a really cool area. Sabrina's first words were, "MOMMY! I stayed up really late last night and watched TV!" She seemed quite proud of herself. Then I asked the babysitter (Dave gave himself the night off) to put Max on the phone. Max was babbling on and on, but I couldn't make out any words. Suddenly the babysitter said, "Tell Mommy you're getting dressed."

And Max said, clear as anything, "Getting dressed."

I stopped in the middle of the sidewalk. I have never heard Max say anything so intelligibly, other than the word "No."

"MAX!!!" I shrieked into the phone. "You said those words SO clearly! I am so proud of you!"

Something really big is going on with Max's speech. I mean, B-I-G.

It's just a little over a year after the stem cell infusion. And I'm beginning to wonder if maybe, just maybe, it did something.

At the BlogHer conference, I was speaking with a mom who was complaining about how much her kid talks. "If Max could talk like that, I'd never get tired of listening to him," I said. She responded, "Oh, come on, you would!" And I said, very firmly, a little edge in my voice, "No, I wouldn't."

I am awestruck by every single word that comes out of Max's mouth. And grateful in a way I've never been grateful for anything in my life.

Photo/Harold Neal

Keep an eye on my husband while I'm gone, k?

Blog peoples, I am off to the Type-A Mom Conference in Asheville, NC. Hopefully, I will not be apprehended at the airport for being on the FBI's Most Wanted list as the woman who set out to destroy Halloween.

Sabrina has already informed me that she is going to watch "lots and lots" of TV. I said, "Daddy follows the same rules I do—you can't watch that much TV." She said, "He's going to forget!" Clearly she's thinking of the free-for-all at our house that happened while I was at Blissdom.

I've left Dave a helpful visual above. Given that I can't expect you guys to come to the house, turn off the TV and give the kids baths, perhaps you can offer Dave your best advice about caring for them while I am gone?


Wednesday, September 22, 2010

The lady who's about to destroy Halloween (that would be me)

I have a piece out in the October issue of Redbook, Just Call Us Halloweenies. It's about how I learned to accept that Max couldn't go to our town's Halloween parade because of his sensory issues, and the alterna-celebration we've come up with. Last year, some of you may recall, he and Sabrina completely ditched the costumes.

It has come to my attention that my essay is a menace to society. This afternoon, I got the following email:

Just read your piece in Redbook about Halloween. Actually, about your decision to be "quirky" and not dress up in costume when you trick-or-treat with your kids. That's really not quirky - it's rude, boring, and shows a lack of spirit. Sure, Halloween is for kids to get candy, but my reason for staying home that day and handing out candy is for my amusement, too - to see all of the unique costumes and the creativity and planning that kids and parents put into dressing up. If more people decide to take the easy, quirky (?) way out and not dress up, my days of answering the door for trick-or-treaters will soon end. If your kids don't wanna dress up, don't take them out. Period.

At first, I took the situation rather lightly and responded:

Actually, it was the kids' decision not to wear costumes (if you really read the piece). I will be sure to inform my children that they are rude, boring and lack spirit, especially my child with special needs. Cheers!

I got this answer in return:

I read the are the adult - let the kids know that if they won't dress up, they won't get candy. If they're too young to understand, just skip going out at all. Just take a poll and see how many people enjoy handing out candy to kids that aren't in costume. Its people like you that ruin the spirit of that day. I just hope that folks don't read your article and all decide to take the easy way out. Best regards!

By this point, I was getting worked up by the prospect that my essay had the potential to ruin Halloween for millions of door answerers everywhere.

I do not want people protesting outside my home, pelting me with candy corn as I make a dash for my minivan.

I do not want to appear on Letterman and publicly apologize for what I have done.

I do not want to go down in history as the lady who destroyed Halloween.

Unfortunately, it is too late to get Redbook to slap a "Caution: contents may be hazardous to your Halloween health" sticker on the October issue. It looks so fun and full of good things; one would never suspect the killjoy essay that lurks inside.

So please, be very, very careful when you read the issue and you get to my piece. It may just influence you to let your kids celebrate Halloween in their own way and otherwise do evil.

You have been duly warned.

Tuesday, September 21, 2010

Max, the car maven

It started with Max recognizing Toyota Siennas everywhere we went. He could easily distinguish them from Honda Odysseys, Dodge Caravans and other minivans. He'd squeal whenever he'd spot one on the road; he could even sight them at night. He has a definite preference for 2009 models (the kind we have).

Then he started pointing out our babysitter's car, a Honda Accord.

Between the popularity of those two cars, there is a whole lot of squealing in our Sienna when we go out.

This weekend, we were driving on a highway behind a Lincoln Town Car. Max was getting really excited; Dave and I had no idea why. Then we heard him say "airplane." And I realized: a year and a half ago, we took a black Town Car to the airport.

"Max, you want to take a car like that to the airport?" I asked.

"ESSSSSSSS!!!" he said, nodding happily.

I am just floored by his total car recall. I have to think of ways to put this to good use! We can definitely work on articulating numbers, for one. And, hmm, wouldn't Max look great in a car commercial?

Monday, September 20, 2010

Max's special powers

Ever since I wrote about Sabrina describing her brother as having "special needs," a commenter's words have been on my mind. Cheryl, who has cerebral palsy, wrote that the phrase "was banned in my house and in 25.5 years I have not heard a single family member (extended included) use that word in relation to me. I find it demeaning and degrading."

I use the words "special needs" when I need to, for lack of better ones. But I do think they make Max seem pathetic to people. Saying "He has special needs" tends to invoke The Sympathy Stare, something I know a lot of you are all too familiar with.

So this weekend, I tried new words that other moms have mentioned. We were at a big hot-dog stand down at the Jersey shore that serves franks in dog bowls. (Do we take our kids to the fanciest places or what?!) The woman there was a little brusque; she must have doled out a whole lot of dogs this summer. Then Max trotted over to the counter, with his so-need-a-haircut mop of hair, and her face lit up.

She asked if he'd liked his hot dog.

"ESSSSSSS!" said Max.

"Do you like French fries?" she asked.

Max just stared, not answering.

"Oh, does he have hearing issues?" she asked.

"No," I said. "He has special powers!"

She looked a little surprised, but then she said, "Oh, I see that!"

The tattooed, tough-looking guy working the grill said to Max, "Want to see something cool?" He directed us to the back of the stand, where he put a potato through the shredder and showed Max how French fries are made. Then Max wanted to go behind the counter to serve hot dogs, so I filled him in on child labor laws and said he is more than welcome to make dinner at our house.

"Come back anytime to see the French fries!" the guy said.

"Come back soon!" the formerly grouchy lady told us.

People are going to keep asking about Max; I'm going to keep saying "special powers." Someday, I hope Max will be able to tell people in his own words—or just tell them to mind their own business.

Sunday, September 19, 2010

A weekend of wonders (warning: PG-13 photo included)

We snuck in one last, long weekend of summer at the beach.

First stop: a zoo Max knows, so he felt comfortable exploring. He made a beeline for the train—the one he wailed about getting on a couple of months ago.

He rode the merry go round! He's never wanted to do that before.

He pointed at three pigs and said "Ax! Ohhmmy! Addddy!" Which made Sabrina wail in despair, "I waaaaaaaaaaant to be a pig too!"

We were all charmed by the giraffes. Max told me this one's name was "Ax," too. Max's ego seems to be experiencing a growth spurt.

And then, two gigantic tortoises. "Ax!" said Max, pointing to both of them.

They soon confirmed that they were, in fact, a boy tortoise and a girl tortoise as a crowd of us stood there, gawking. "They're just playing," parents told their kids. It was totally bizarre, like watching Animal Planet live—except with the stuff they edit out.

In other news, this weekend Max floated by himself in a tube for the first time.

Sabrina went surfing...on her daddy. Just in case anyone needed further proof that he lets her walk all over him.

One night, we went to a fifties style ice-cream parlour, where Max ate two scoops of chocolate ice-cream and met Elvis. (This place specialized in The Elvis Pretzelly, ice-cream in a pretzel cone.)

The kids loved the car booths.

Tonight, Sabrina and I went for a walk together on the beach while Dave and Max hung out and ate yet more chocolate ice-cream.

She made me a sand cake.

But of course, there's nothing like riding the car shopping cart at Best Buy.

Friday, September 17, 2010

A special sibling connection...and a chance to win My Baby Rides The Short Bus

This is a guest post by Yantra Bertelli, co-editor of My Baby Rides the Short Bus, a quirky anthology of essays by parents of children with disabilities. I don't know about you guys, but until I had Max, I'd never even realized that kids with special needs ride a different bus than other kids. Then, when Max was three and headed off to school for the first time, the short bus showed up at our home. Now we're card-carrying members of the Short Bus Club—and I related to so much in this book. Read Yantra's moving post, then find out how you can win a copy of it.

My fourteen-year-old daughter pushes on her brother’s cheeks. He is taking big gulps of air, pursing his lips together and anxiously waiting for her to apply pressure on both sides at the same time. She pushes, air rushes past his lips and he smiles a wide do-it-again grin. They play their game again and again till one of them moves away in silence, maybe throwing in one of their two-step handshakes she taught him over the last year. Momentarily, two of my four kids actually seem to “get” each other. Sure, there are complaints and power struggles, but those moments are particularly one-sided, and this interaction staves off the broader picture for a few seconds. I decide to enjoy it.

What is less obvious about this moment is that my son is fifteen months older than my daughter, and the handshakes and cheek popping are his and his sister’s ways of communicating with one another. He is deaf, has autism, and a few other problematic neurological issues that would take me a while to list and explain. Though we usually sign lines of complete thought with him, he uses less than ten signs in a given day to make requests concerning his basic needs.

He appreciates following his own schedule. He will lash out at times when the individuals around him cannot help him cope with his feelings or are unable to comprehend a question or problem he is having. He has never told us that he was happy, sad, or angry without being prompted to do so. Additionally, the kids are stepsiblings, he did not share the first six years of his life with her and she did not share her first five with him. I know she can remember the early years when she was the big sister and not stuck in the middle. I do not know what he remembers.

The kids arrived at their exchanges on their own. I did not model the interaction for them or prod one or both of the kids to look into each other’s eyes and hold still. They figured it out, both kids had the desire and patience required to follow through in a multiple step interaction. It is true that my daughter often initiates their interactions, unless he wants water or food. She is in his face and almost too overwhelming at times for my tastes. She does not let him off the hook easily, though will back away if he starts getting agitated. She pushes him to give her something—some strand of interaction that she can work into play. Yet, I have also witnessed him puffing up his cheeks as a response to seeing her. Play brings her brother out of his in-the-moment need enough to long for interaction.

As they grow into adulthood, my typically developing children will ultimately initiate whatever relationship any of them have with my son. I have considered attempting to instill a sense of obligation in them so they will help him out if my partner and I cannot. I have often believed obligation could be an opportunity, a building block they could construct a relationship on. I want to trust in their desire to care for their brother out of love and in this line of thinking obligation would be the roots of this love. Unfortunately obligation can lead to resentment. Obligation is one-sided. Obligation can interrupt the delicate back-and-forth of relationships. In truth he is part of our family and in many ways obligation is appropriate, but I worry over the back-and-forth. In typical sibling relationships the expectation that you will fill your parents shoes one day with your brother or sister doesn’t enter your consciousness when you’re a kid. When your fifteen-year-old brother needs to hold your mother’s hand when he crosses a street, believe me, the future possibilities churn in the back of your mind.

One of my daughter and son’s handshakes starts high above his head. He reaches up, left arm angled, slaps her hand above his head, after making the half circle in the air he catches her hand at his lowest point for another slap, then he lets his hand fall to his thigh. Then they share a single knuckle tap, fists closed, a part that he often tries to lead with. Each time their hands connect, his eyes briefly find hers and they smile, together, connected.

I do not know if these moments will become memories for both or if they will find other ways to show a glimmer of themselves to one another. If play is their communication, I wonder if it will be enough to build a relationship on over time. When I am lucky to catch their exchanges, it is obvious they see and understand one another.

To enter to win one of two copies of My Baby Rides The Short Bus, leave a comment below about something you never realized until you had a child with special needs. I'll randomly choose two winners by September 23, announce them here and sent out e-mails. Please make sure you leave your e-mail if it is not visible on your blog.

Update: The book winners are Lynn and Mo. Thanks again to Yantra for this lovely post—and to all of you for leaving such moving responses.

Thursday, September 16, 2010

The double life I lead as a parent

Tonight, Dave and I went to Open School Night at Sabrina's kindergarten. We met her teachers, got the scoop on what they're teaching, heard about how great Sabrina is doing. It's a whole new world for us. There were no walkers in the hallways, no speech or occupational or physical therapists to confer with. The teacher didn't talk to us about Sabrina's ability to grasp a pencil, say her name out loud, or point to something on a wall. The biggest challenge we discussed: getting Sabrina to eat her veggies at lunch.

It hits me sometimes, that I lead two very different lives as a parent. Like the other night, I went to Target to pick up some birthday presents; Max and Sabrina both have parties they're going to in the next few weeks. First, I looked for a present for Max's friend, a kid in his school. I was thinking of a remote-control car. But the remote controls all had such teeny tiny levers, and I thought of how hard they'd be for a child who has issues with fine-motor control. I briefly considered a fun toy a neighbor has—you stomp on a pedal and shoot a foam rocket skyward—only this child is not completely ambulatory and I didn't know if he'd be able to handle it. Fifteen minutes later, I settled on a pair of walkie talkies. This child's speech is coming along, and I thought they would encourage him.

Then I passed by a Pixos set (these little wads of rolled-up paper you glue together to make shaped creatures) and grabbed it for Sabrina's friend.

Of the two parenting lives that I lead, I wouldn't say the one in Special World is necessarily harder; it's just more complicated. It involves more thinking, planning, plotting, accommodating, everything-ing.

Then again, in Special World I get to experience pleasures other parents don't. There's the burst of bliss I feel when I hear Max trying to talk, when I watch him trotting down our street after a neighbor's puppy with his skinny little legs moving as fast as they can (oh, if those NICU doctors could see him go!), when I observe him struggling to pick up a ball with both hands and finally succeed.

Having a double life keeps me more than busy. But it's also made parenthood richer and more satisfying than I could have ever dreamed.

Wednesday, September 15, 2010

Back To School Giveaway: Win a $50 spa gift card

Today, I had the sad realization that summer was gone and I hadn't gotten myself a single pedicure (cue the mournful violin music). I didn't get one last summer, either. I am already pretty low-maintenance about beauty stuff; I don't require regular manis, highlights or blowouts. I barely have the patience to sit through a haircut. I don't even like massages (I know, that's weird). But I used to go for regular pedicures come June; it made me happy to look down and see pink polish peeking out of my sandals. I think it's clear, from my untrimmed head to my undone toes, that I need to spend a little more time on me.

Meanwhile, I'm happy to play beauty fairy and give away three $50 spa gift cards, because I'll bet a lot of you don't have much time for pampering, either. They come to you courtesy of Spa Week, which kicks off on the West Coast and in Chicago this week and will be coming to the East Coast, Midwest and Toronto the week of October 11th. Spas around the country offer massages, facials and other services at the discounted price of fifty bucks.

The gift cards, which don't expire, are good at lots of places around the country; to see which spas in your area accept them, type in your zip code at the Spa Week site. Whether or not you win, you can get a $50 treatment; check out which spas are participating.

To enter to win a gift card, leave a comment below telling me which beauty treatments you most adore getting. Me: pedi (duh), and European facials in which someone squeezes my pores silly.

Bonus entries:
Like Spa Week on Facebook.
Subscribe to the Love That Max feed; you can do that here or another way, and leave a comment saying how you subscribed.
Tweet about this giveaway and leave the link below. Here's a tweet: #Giveaway: Win a $50 spa gift card courtesy of @LoveThatMax and @SpaWeek, expires 9/22,
Follow this blog on Blogger.
Like Love That Max on Facebook
Blog about this giveaway, and leave the URL below.
Come to my house and babysit so I can go get a pedicure. Kid-ding!

This giveaway is open until Wednesday September 22 10:00 EST, and is for U.S. residents. I'll randomly pick three winners, announce them here and send out e-mail alerts. Note, please leave your email if it is not visible on your blog.

Now, enjoy this video on the perils of getting naked!

Update: The winners of the $50 spa gift cards are Jana Weaver (who will surely be getting a massage), Shellycox (ditto) and nhnoblitt (who's going to run, not walk, to get a pedicure). Happy pampering, ladies!

Tuesday, September 14, 2010

Word-filled Wednesday: Max has his longest phone conversation in the history of...Max

Here's Max talking on the phone with my mom (aka "Babba"). I love how clearly he can say "NOOOOOOOO," he wasn't doing that last year at this time. He wasn't even stringing sounds like this together last year. Of special note: At second 0:32, you'll hear him say car wash—and he got a pretty good "shhhh" sound in there, which I hadn't heard before.

I suspect he was suggesting my mother buy him a car wash, asking what her sign was, and giving her stock tips, but I can't be sure.

Monday, September 13, 2010

What makes me lose it: the screeching

Max is a pretty happy kid, as you might glean from his ever-present smile. But lately, he has been screeching when he gets upset. And I mean loud, high-pitched, ear-splitting screeches that can go on and on for a stretch of 10 to 15 minutes.

The screeching isn't just unnerving, it makes me upset.

It shoots right through my body, tensing up my neck and shoulders and making my heart beat faster and my head throb.

It leaves me freaked for a while after it ends, too.

At its most intense, the screeching makes ME want to screech right back at Max. And I recently did in the car. I lost it.

"MAX, STOP YELLING!!!" I yelled, after Max had been screeching for 10 minutes straight, over what, I can't recall.

Dave, who hardy ever gets mad, glared at me. "Go blog about how you yelled at Max," he said. Meaning: That was a really crappy thing to do and your punishment is everyone should know about it and maybe tar and feathers would also be appropriate.

And so here I am. Not because I am "outing" myself, but because I need to vent. Max's screeching is something I am having a really, really hard time handling.

It happened a few times this past weekend. First, we were waiting in a cavernous apartment lobby for friends, and Max wanted to wheel around one of those luggage carts. The doorman said no. SCREECH SCREECH SCREECH SCREEECH, echoing off the walls. Torture for all of us. Dave finally took Max outside.

Then we went to visit The Bronx Zoo. Max was most charmed by a monorail ride through "Asia" (spotted: a tiger, elephants, rhinos, monkeys, ponies, and lots more) and a tram ride that shuttled guests between parking lots. We were really psyched when Max ventured inside JungleWorld, as he usually can't stand indoor exhibitions and this one was a great one complete with gibbons, otters, tree kangaroos, tremendous turtles, waterfalls and other natural wonders. Then we went to the Congo Gorilla Forest. The viewing room was large and echo-y and Max started screeching. I tried distraction; at one point, there were two little gorilla brothers fighting and I said "Look! Max and Sabrina!" The ape siblings caught his attention for all of 10 seconds before the screeching began again. We booked out of there.

A lot of moms have things that get to them. A few months ago, the awesome Jean at Stimeyland wrote about her son's habit of snorting. Her words rang true: "It is maybe the worst thing I have ever heard. It actually causes me some pretty intense physical discomfort. I feel it all across my shoulders and down through my chest." Catherine at Her Bad Mother has raged against her little girl's whining. Obviously, I am not alone in being driven nuts by a child's grating habit. I just don't know what to do.

Wait, it gets worst. Sabrina has started screaming when she's upset. She sometimes does stuff Max does, and this is her latest charming copycat behavior. She doesn't scream words, just lets out a big "AAAAAAAAAAAH!" She's doing it for attention; Max is doing it because it's become his go-to behavior when he's out of his comfort zone. Max doesn't screech at school. He doesn't do this with his therapists. He doesn't do this when he's with friends. He does it only with Dave and me when he is wigged out or not getting his way.

Calmly repeating "Max, please don't yell" doesn't work (and, in fact, makes him screech louder). Trying to get him to communicate his feelings by iPad in the heat of the moment most definitely doesn't work. Someone I know said that we should learn to ignore it; if we don't respond to the behavior, Max will realize he's not getting a reaction and quit. But ignoring it just isn't realistic in public spaces. I'm guessing another possibility is that we need to teach him to replace this behavior with another; I'm just not sure what.

As the saying goes, ARRRRRRRRRRRGH.

Sunday, September 12, 2010

Back To School Giveaway: Win a Panasonic vacuum

Of all the chores in the world, vacuuming is the one I least mind doing. I am not sure why; I guess it's gratifying to hear stuff clink-clink-clinking up the hose. Also, I like pushing things around. Sometimes, I dance a little while I vacuum, though that's never yet been caught on video, which Dave could easily use to blackmail me if he so chose.

I met a super-nice lady from Panasonic at an event a few months ago, and she let me try out a Jetspin Cyclone Bagless Upright Vacuum Cleaner. I like that it has a HEPA filter to remove allergens and pollutants. I like that you don't have to buy bags because it has a fully washable cup, to get out all the dirt. But what I love most is the infrared dirt sensor, which senses whether the vacuum is still cleaning. If the light is red, there's still stuff on the floor or carpet; if it's green, the area's clean. By the time I'm done with the rugs, I know they're clean.

Wouldn't it be great if someone invented a light that alerted you to when your five-year-old is about to have a temper tantrum, so you could brace yourself and/or run for cover? Just a thought.

Want to win your own Panasonic Jetspin Cyclone Bagless Vacuum (retail value $249.95)? Just leave a comment below about the chore you least mind doing—vacuuming, dishes, laundry, whatever.

Bonus entries:

Follow Love That Max on Twitter
Subscribe to the Love That Max feed; you can do that here or another way, and leave a comment saying how you subscribed.
Tweet about this giveaway and leave the link below. Here's a tweet: #Giveaway: Win a #Panasonic vacuum that actually makes the job fun from @LoveThatMax, open til 9/20,
Follow this blog on Blogger.
Like Love That Max on Facebook
Blog about this giveaway, and leave the URL below.
Come to my house and clean. Kid-ding!

This giveaway is open until Monday, September 20, 2010, 11:59 p.m. EST, and is for U.S. and Canadian residents. I'll pick the winner via, announce the winner here the next day, and alert you by e-mail. Good luck!

Update: The winner is Aimee, who says she finds it relaxing to do laundry. You're about to start loving vacuuming, too! Congrats on winning this Panasonic wonder and, as my mom likes to say, use it in good health.

Thursday, September 9, 2010

How Sabrina describes her brother

We're at the playground. Max is turning a steering wheel on a jungle gym; Sabrina's standing nearby and talking with another little girl.

Carly: "Why doesn't Max talk?"

Sabrina: "He needs special needs."

It's a start! She'll get the wording right soon enough; I liked that she said it so matter-of-factly. I know that as she gets older, she'll get lots more questions about her big brother, and I hope that she'll answer them in the same friendly, straightforward way.

Wednesday, September 8, 2010

Care to help create Max's car wash costume for Halloween?!

I'm sitting out on our deck tonight enjoying the zen of the chirping crickets and that lovely chemical-y smell coming from the anti-bug candle. Weird, isn't it, how right after Labor Day, the weather suddenly feels fall crisp, it suddenly gets darker earlier, everyone suddenly kicks into high gear. My email in-box just might explode.

The kids have already got Halloween on the brain. Sabrina wants to be an iCarly something or other. Max said, cryptically, he wants to be an "arrrrr wahhh" (car wash), and because that is pretty much all he can say on the topic, I am left to my own devices.

In other breaking news, Max keeps pointing out things that look like chocolate ice-cream—his new brown shoes, the oversized teddy bear in his room. Yes, you read it here first, brown may be his new favorite color. So I do not have to worry about whipping up anything purple. Still, I am gun-shy about going all-out for Halloween.

Some of you might recall last year's Bed, Bath & Beyond episode, in which I found the most glorious big purple bag at the store and decided to craft some sort of costume out of it. Suggestions came pouring in—eggplant, Crayola crayon, grapevine, Flying Purple People Eater, gigantic raisin. I ended up making a purple car, and got Sabrina an overpriced Ariel outfit.

The kids refused to wear them trick-or-treating, and basically went as themselves.

Being the eternal optimist that I am, I'm game to make Max a car wash costume. I just Googled "car wash" images for inspiration, and a whole lot of them involve wet, half-naked babes sponging down cars. Somehow, I do not think it would be appropriate to hire a wet, half-naked babe to escort Max around for trick-or-treating, so that's out, although I wouldn't mind seeing the looks on the neighbors' faces.

So, what the heck should I do for a car wash costume?

Tuesday, September 7, 2010

Team Hoyt: Am I the last person on the planet to hear about them?!

Tonight, I sat next to a neighbor, Barnes, on the train home from work, and he mentioned Team Hoyt, a father and son from Massachusetts. "My friend is doing her first triathlon, and someone told her that anytime she hit a wall she should check out videos about those two," he said. "They're amazing." I've been lying on our bed watching the YouTube videos since I put the kids to bed.

Rick Hoyt has spastic quad cerebral palsy. Three decades ago, when he was a teen, he told his dad, Dick, that he wanted to participate in a charity run for a kid paralyzed in a lacrosse game. They did the run together, Dick pushing his son in a wheelchair. One thousand-plus races later, these two are still running—marathons, duathlons, triathlons. Rick is 47; Dick is going to be 70 next year.

"Show Dave the videos!" Barnes said, laughing. "He needs to get going!" Barnes has the most dry sense of humor and let me just say, I appreciate people who can joke like this instead of tap-dancing around the fact that Max has cp.

Here's a Today Show segment about The Hoyts:

Anyone with a pulse would get worked up watching this. But when you have a kid with cp, you could pretty much bawl all over your bedspread, which I did. Especially when the interviewer read a fan e-mail out loud and said to Dick, "You're more than a father, you're a hero to so many," and Rick turned his head and smiled at his father so adoringly (minute 5:25).

Now, of course, I'm feeling like I need to do more, more, more for Max.

But I'm going to leave the triathlons to him.

Monday, September 6, 2010

On translating my child

The really, really good news: Max has been trying to say more stuff lately.

The hard part is that a lot of times, we're not sure what he's saying. Yes, we can dash over to the iPad and try to get him to show us with the Proloquo2Go app, but that's not always practical and sometimes, honestly, I just want to figure it out myself.

Today, we had a bunch of friends over for a barbecue, and Max was standing by the swingset.

"Aaaaaay," he said, pointing to the wooden frame of the set.

We were all stumped.

"Aaaaaay," said Max. "Aaaaaaay! Aaaaaaay! Aaaaaaay!"

These are the moments when I get really frustrated with myself. Shouldn't I be able to get what my own child is saying? Where's that maternal instinct?

It's painful when a child who has so much trouble with speech is trying so, so hard to tell you something, and you're not able to understand. Sometimes, I wing it. "Yes, Max!" or "Oh, wow!" I'll say, hoping he'll repeat himself so the next time I'll catch it. I feel a little bad about pretending, but it feels even worse to not comprehend what Max is attempting to tell me. Once in a while, Sabrina jumps in and translates. She's a little better at it than Dave and I are.

Suddenly, though, I got what Max was saying. And I couldn't stop grinning. The frame of our swingset forms the shape of the letter "a," the second letter in Max's name. He's gotten really into in spelling out his name.

Later, he showed us an "x." Not sure what he's going to do for an "m" but I'll bet he comes up with something.

I'm hoping that, with time, Max's speech gets more intelligible. Years ago, when Max was around three, I asked our pediatric neurologist if he thought Max would talk. He said yes, he would, and that he would sound like a deaf person. That's true, except Max doesn't sound nearly as clear. Manipulating his tongue to say consonants is really hard for him. He has "m" and "r" down pat, and "x" and "g" more or less, and on occasion I've heard a "b" and "d," but there are several consonants I have yet to hear, including "c" and "f" and "p" and "s."

But I have hope. Lots and lots of hope.

How is your child's speech coming along?

Sunday, September 5, 2010

Maestro Max: My little piano man rocks out

Last night, Max sat down and started playing piano. For the first time, he used his pointer finger to pick out notes, I captured a bit of that here. Not caught on tape: him cracking up when I plinked out Happy Birthday (a song that kills him every single time).

Max has always responded to music; he was able to sing words before he could say them. He is still getting music therapy from Joanne, and he's still singing.

I bumped into a neighbor of ours over the weekend. He's a music major who's taking a year off from college to teach music. He said he'd be game to come by and give the kids some lessons, so I'm taking him up on it this week, and we'll see how it goes.

I know how to play piano, but I'm horrible at note reading. As a kid, I learned by the Suzuki method, which emphasizes playing by listening and repetition. I'd get a record of classical music from my teacher, which I'd play again and again. When I'd finally sit down to play a piece, I knew by heart how it should sound and so it wasn't hard to figure out without having to really read the notes. I can play some stuff really well but it takes me forever how to learn anything new. Also, I don't like playing in front of other people, I'm shy like that.

It would be awesome if Max and Sabrina like piano but if it doesn't happen, I'm not going to force it. My parents were pretty loose about lessons (usually, I was the one asking for them—piano, ballet, photography, whatever), and I'm going to be the same with my kids. But it would be so good for Max to play piano, for so many reasons.

And then I could hire him to entertain for all our parties.

Friday, September 3, 2010

Teachers who wow you (plus a $50,000 grant opportunity for your school)

A couple of weeks ago, the ladies over at The Motherhood asked if I wanted to be a part of a sponsored Clorox project. All I had to do? Write about an outstanding teacher. I was a little stumped. Because the thing about the teachers Max has had is this: Every single one of them is outstanding.

These teachers have extreme patience. Mind-boggling amounts of patience—for showing kids how to do things repeatedly, and then showing them again the next day and the next week and the next month.

These teachers have extreme flexibility, because what works for one child isn't going to work for another. Obviously, this is true of any teacher in any school but when you're at a school for kids with disabilities, there can be a very wide range of abilities within one classroom.

These teachers have extreme willingness to guide parents. Over the years, I've asked teachers' advice on everything from what kind of websites would be helpful to boosting Max's cognition to whether to be concerned about his obsessions. They've been generous with their time, their e-mails, and their reassurances that it's OK for Max to be overly enthusiastic about purple, car washes, spaghetti, whatever.

These teachers have extreme dedication. Their duties go far beyond simply educating a child. In Max's school, teachers help kids with toileting. They help feed them (in Max's recent progress report, one of the "instructional objectives" is "Max will chew a variety of food textures"). And they help with basic life skills. One year, a teacher at Max's school e-mailed me over a weekend to tell me, excitedly, that she'd found a cute animal zipper pull that would encourage Max to close his jacket all by himself.

While I haven't always agreed with their philosophies on every single thing, in general, I stand in awe of the teachers who've worked with my boy. They have played a tremendous role in Max's progress. They are among the extra-good people of this world, for having chosen a more challenging path in order to help kids with special needs live their best lives.

Do you have a teacher (or a bunch!) you'd like to give props to? Share your thoughts below and I'll randomly pick one winner to get a Clorox pack that contains:
• Clorox Disinfecting Wipes
• Dr. Harley Rotbart’s book Germ Proof Your Kids
• Clorox Hand Sanitizer
• Tissues
• Fun stickers
• Crazy cutting scissors
• Markets/pencils/crayons

For extra giveaway entries...
• Follow Clorox on Twitter.
• Tweet about this giveaway using the tag #cloroxbrightfuture and leave your tweet link.

This giveaway is open until Tuesday, September 7 at 11:59 p.m., and is for U.S. residents only. I'll randomly choose a winner and announce it here.

FYI, Clorox has a really great thing going on for schools, the Power A Bright Future grant program. Between now and September 27, you can nominate a new or existing school program for a chance to win a $50,000 grand-prize grant or one of three $20,000 grants. The public will vote on the winners, who will be announced in November. Nominators will get Clorox classroom tools and the chance to win coupons for Clorox faves.

Thursday, September 2, 2010

School bus insanity: the driver let my five-year-old off at the wrong stop

Well, Sabrina's first day of kindergarten started off just fine: she agreed to wear the outfit we'd chosen, she downed a whole bowl of Raisin Bran for breakfast, we remembered to take her lunch out of the fridge, and she actually posed for photos without sticking out her tongue. Then all four of us drove to the bus stop. It never showed because, as it turns out, we waited on Park Street and the stop was on Park PLACE. So we drove her to school and I got to meet her teacher and classmates and see her cubby. It's so funny how kids are always so proud of their cubbies, as if they should come with a title and deed.

This is the first thing Sabrina got to do.

I get a call at work at around 4. "Hi, you don't know me, I'm a mom at your little girl's school," a woman says. She proceeds to tell me that Sabrina trailed her two girls off the bus. She noticed Sabrina standing there, looking perplexed. She realized nobody was there for Sabrina. That was because Sabrina was AT THE WRONG STOP. The bus driver had no clue where to take her. Sabrina forgot her address, but did remember her home phone. Except nobody was at home because Dave was at the bus stop. So they made a ton of calls and figured out Dave's cell. And they got her to the right stop. "So ignore the hysterical-sounding message on my voicemail at home," the mom said.

Whoa. Just, whoa.

I called the driver to figure out what had gone wrong. He kept rambling and when I finally said, "Could you try to just explain in one sentence?" he said, "It was my first day."

Which roughly translates to: Sorry, ma'am, I temporarily misplaced your little child on her first day of school but only because I was dazed and confused and that's actually not my fault because nobody told me that I had to know where all of the kids lived but no worries and the dog ate their homework.

Maybe I've been spoiled by just how cautious and careful drivers have been with Max. Maybe I am overreacting due to my own first-day jitters. But tomorrow, you can bet I will be calling the head of the bus company, and I hope it is not his first day, too.

Sabrina, meanwhile, couldn't be happier. "MOMMY! THE GUY ON THE BUS DIDN'T KNOW WHERE I LIVED! BUT NOW HE DOES!!!" she announced when I got home from work. She loves her teachers, she made some cool pictures, she saw a purple house when she was driving around on the bus.

"Did you write me a note for my lunchbox?" she asked, knowing full well that I had. "Yes! What did it say?" I asked. "It said 'Mommy loves Sabrina'" she told me. "Can you write me a note every day? Please?"

And just like that, I was calmer.

But I am still off to have a nice glass of wine.

Wednesday, September 1, 2010

First day of kindergarten, and I'm the one with jitters

Tomorrow, Sabrina starts kindergarten. It's the first time I'm experiencing this big transition because at five, Max just stayed in the same school he'd been in; there's no kindergarten class there. I've been pretty relaxed about the whole thing and then suddenly today, I got all hyper.

I called the school to find out if she could wear shorts (yep).

I called again to find out what to send for lunch, like I had never prepared lunch before in my entire life.

I called Dave three times to make sure he'd gotten in touch with the bus company about what time the bus was coming.

I ran out to get the book The Night Before Kindergarten.

I called Dave again to make sure he'd remembered to ask what time the bus company was dropping her off.

I even picked out her clothes ahead of time, the sort of organizational thing I never do. This was mainly because we typically have a 7-minute battle every morning over her outfit. I know I should just let it go but I get so tired of seeing her in Max's gray shorts and a gray Mickey Mouse t-shirt, her current favorite outfit. It's parent abuse, I tell you—I am being deprived of my right to see my little girl in cutesy dresses, although I don't think suing her would accomplish anything. Today, though, I didn't even bother asking her to wear a dress tomorrow. We settled on a previously unworn white t-shirt with a gumball machine on it (which she's ignoring because it's not gray) and a pair of Max's brown shorts...from the laundry.

Sabrina is totally calm. Tonight she asked vital questions like "Will they have snack?" and "Will I be able to wear Max's shorts every day?" but in general, she seemed pretty nonplussed. I read her The Night Before Kindergarten, and she most liked the part at the end where the parents bawled because—SPOILER ALERT!—they were sad about leaving their kids at school. So, she likes to torture me by not wearing dresses and she'd like to see me cry. Nice!

The bus will be picking her up at 7:15. Dave and I were all ready to drive her for the first day but she said, definitively, "I want to take the bus." For years, she's watched Max board a small yellow school bus, and I think she's all, FINALLY! I AM GETTING TO RIDE THE BUS. I think she's aware, too, that she's getting older, and I'm not sure she completely likes that. When I got home from work today, she was sitting at the kitchen table, drinking chocolate milk and wearing an old Elmo bib.

Truth, I'm not totally ready to let her get older, either.

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