Saturday, October 30, 2010

It's my second blogaversary!


Thank you for the support, the enthusiasm, the inspiration, the comments, the babysitting. Oh, wait, that hasn't happened yet.

Here's the first post I ever wrote. This blog has been all that, and more.

xo


Photo/Natalie Mitchell

Stuff Worth Knowing About, 10/30 Edition


• The National Inclusion Project works to get kids with disabilities participating in all aspects of life. This is the last weekend to vote for them for the Pepsi Refresh Project, please do!

• Marissa's wonderful dad is giving away an iPad over at Marissa's Bunny. Enter by November 7 at noon EST.

• K2K USA, Save The Children's latest advocacy effort for kids, is having a 2011 Valentine's Day Card contest. Kids design their own cards, with a heart theme, and enter them; the deadline for receipt is November 8. Five winners' designs will be made into cards and distributed as a gift with donation to benefit programs that help U.S. kids in need.

• October is Spina Bifida Awareness Month, and it's over tomorrow but something to think on year round. Birth defects occur in 7 out of ever 10,000 births in the U.S., and eight births a day are affected by Spina Bifida (a condition in which the spine doesn't completely close). What helps prevent it: Downing folic acid before pregnancy.

• The Sound of Music, one of my all-time favorite movies, celebrates its 45th anniversary this year. One of these days, I'm going to show it to the kids, especially now that it's coming out on blu-ray. On Monday night, VH1's honoring Julie Andrews and will be paying tribute to the movie. There's also an anniversary CD with all the old songs and GLEE's Lea Michele singing "My Favorite Things."

• Ideas for where to donate Halloween candy (you know you'll have too much and it's a nice way to teach kids to do good): Hand it over to a local Ronald McDonald House (call first), Meals on Wheels, nursing and veterans' homes, and local shelters, food pantries and agencies that work with kids. Operation Gratitude and Any Soldier will ship candy to soldiers around the world.

• I have lots to tell you about the Halloween parade, but for now, I'll just leave you with this:

Friday, October 29, 2010

Now you'll never want to visit me


I grew up in an apartment with piles of papers everywhere, a hall closet with shelves of hotel bar soaps, and dozens of shoeboxes filled with unworn men's shoes. Sometimes, my dad would sit on newspapers at the kitchen table because there was nowhere else to put them.

Pack rat sounds mean. So let's just say my dear dad is a pack man. And that my response was to grow up to be very neat. Friends described my room apartment I rented in my twenties as museum-like, because things were always in their place. Having kids and a husband who has Toss Everything Anywhere Syndrome loosened me up but still, our house is relatively neat. I need that for peace of mind.

Clean? Well, er, yeah. I am good about wiping down surfaces and the bathrooms. But otherwise, I feel no guilt if I don't clean regularly, unlike 80 percent of women ages 25 to 42 recently polled by Scrubbing Bubbles for their Dirty Work Index. Nor do I feel that how clean my home is "reflects upon me as an individual," unlike 79 percent of women surveyed. Nor do I worry what others think about the cleanliness of my home, unlike 64 percent of women they asked. Nor do I clean when my MIL visits, unlike 53 percent of women polled.

I am 100 percent glad I don't know the squeaky-clean women they surveyed, and I am sure they would not want to hang with me, either. Although if they wanted to come over and clean the house, they're welcome to and if they wanted my MIL to visit them, that would be fine too.

I found all of this out at a Scrubbing Bubbles event the other day at the Rock Center Cafe in New York.  Colleen Padilla from Classy Mommy invited me (she talks as fast as I do, love that). The event did not feature cutesy drinks like The Cleantini or appetizers like Dust Bunny Meatballs, just good food, author and TV host Donna Erickson, and parting gifts of two cleaning products and two nice books, Donna Erickson's Fabulous Funstuff for Families and At Home With Friends.

I haven't yet put the cleaning stuff to use (though I checked out the Scrubbing Bubbles site and I liked that it listed the ingredients for products so people can make educated decisions). Here's the deal: I want the house to be clean enough to keep the kids healthy and not sneezing. But the things I take real pride in are my husband and the kids, my work and this blog. Also, I have really nice toes.

If our kitchen's chrome appliances are dull or there's dust on the TV, so be it. I'd much rather spend my time buffing and polishing and generally taking care of my family. However, if Max or Sabrina (or Dave) wanted to learn how to clean the house, I'd be all for it and come to think of it, wouldn't dusting be a nice occupational therapy exercise?

OK, tell: How neat is your house? How clean is your house? How much do you care? Would you maybe still come visit me? And if you are one of the ladies who took the Scrubbing Bubbles survey, when would you like to come over and clean? I'm free Wednesday mornings!


Photo/Gustav Metzger

Thursday, October 28, 2010

And now, the iPad/Proloquo2Go videos you've been waiting for


Say that your kid got an iPad and the Proloquo2Go program. And say that for the first couple of months he was using it a lot to communicate and you were very psyched.

And then one day, your husband (not his real name) showed your kid how to watch car wash videos on YouTube. Just suppose.

And after that, your kid hardly ever wanted to use his iPad and Proloquo2Go at home for speech because he was completely obsessed with watching random cars going through random car washes. Who could have guessed that so many people would bother to tape this stuff? Worse, whenever possible, this kid's sister would beg to borrow the iPad and use it to play games. Sometimes, she would stuff the iPad under her shirt and sneak it into the car. Once, she attempted to bring it into the bathtub but was foiled by her wise (and beautiful) mother.

Say that this has been our family. And I am going nuts. In desperation, I asked Max's speech therapist at school to videotape him using the iPad and Proloquo2Go—since he gladly uses them there—so I can motivate him at home. It's typical: Max does stuff at school that he won't do for us.

This situation calls for drastic measures. I'm going to erase YouTube from the iPad, ban Sabrina from using it (trust me, the kid has plenty of video games to occupy her time) and prepare for a double meltdown.

Meanwhile, above is a video of Max navigating his way around the iPad during speech therapy in school, and here's one of him in class figuring out the date.

Me, I am off to finish Max's car wash costume and further enable his obsession.

Wednesday, October 27, 2010

Tuesday, October 26, 2010

What are your kid's special strengths?


Last night, as I was getting Max ready for bed, he said "Nooooooooo."

I had all of the necessary bedtime accoutrements in place (see above), so I was puzzled. "What's wrong, Max?" I asked.

"Noooooooo," Max said, again, only this time he was pointing to something on the side of the bed. I leaned over. It's a fire-engine bed he's had for years; I had never noticed the "No. 7" on the side.

But Max did. And he was reading the word "No." Yes, R-E-A-D-I-N-G.

When I sit with Max and go over the school reading words of the week, he knows them—he's got "the" and "and" and "I" down pat, among several others. But other than noticing his name when we go out (it's everywhere, given all the "max height" type of wording on signs), Max had never before spontaneously read a word to me.

"That's right! It says 'no!'" I told Max, who had the biggest grin on his face.

I spend a lot of time trying to help Max move past (and move around) his challenges. I don't give his strengths nearly enough due, which I'm guessing isn't uncommon among parents of kids with disabilities. We are so focused on their special needs, we forget to celebrate their special strengths. And Max has an amazing one: He has an exceptional visual memory. It's why he can point out every single Toyota Sienna on the road (even ones in the distance or in the dark), and remember how to get back to a car wash we haven't been to in forever, and recognize faces of people he's only met once. It's a strength that is obviously going to come in handy for reading, among many other things. And it's really kicking in.

Max has plenty of other strengths: His spirit and determination, his curiosity, his ability to focus (not something he did well when he was very young), his speed at picking up new ideas, his sense of humor, his social-butterfly tendencies (he is practically the mayor of his class), his uncanny knack for knowing just how to get under his sister's skin.

What are your child's special strengths?

Monday, October 25, 2010

The people who give me extreme hope

Within a week of Max's birth, I was on an e-loop for moms of kids who had strokes. I constantly and shamelessly asked the other moms whether their kids were crawling, walking and talking; at what age they had crawled, walked and talked; when they first knew their kids might crawl, walk and talk. I asked specific questions: Had their babies had trouble feeding? Did their babies clench their fists? Did their babies make babbling sounds and if so, what kind?

I wanted so desperately to know what the future held for Max, and comparing him to other kids seemed like a good way to get clues. The doctors at the hospital had grim predictions. I needed some reassurance, any reassurance, that at least some of those predictions wouldn't come true.

As Max got older, I quit looking at what the other kids were doing and learned to focus on what Max was doing. I found people to give me perspective and inspiration: Max's teachers, his therapists, our wise-and-kind neurologist, the upbeat developmental pediatrician dude who calls Max "sweetheart" and who inevitably mentions that Max has great hair.

Most inspirational of all to me are the adults with disabilities I come into contact with, in real life or in this space. Like the 22-year-old who emailed from Sri Lanka last week asking about treatments in the US for adults with cerebral palsy; she has the spastic kind and has some issues with balance. The cp, she wrote, "affects only my motor skills, such as walking and muscle coordination. I live my life almost as a normal person and I also attend college." This, I loved to hear.

Adults with disabilities help me to not just see the possibilities of what Max might achieve, but believe in them.

Last week, I met an amazingly inspirational person. Through a friend (hi, Margie!) I was invited to attend Advance, a special-needs funding conference sponsored by the Ruderman Family Foundation. One of my favorite sessions was about raising awareness through the media, where I met Elaine Hall, founder of The Miracle Project, a theater and film arts program that integrates kids with special needs and typical kids. "If you don't fit in, stand out," she said in a clip we watched. Hallelujah! Heads up, there's a new documentary out now about autism, Wretches and Jabberers, which sounds fantastic.

Before that session started, I'd been chatting with the guy sitting next to me about this blog. "You're a blogger?" said a man near us. "That's so cool!" And that's how I met Richard Bernstein, an attorney. He told me he's a disabled rights activist; I didn't realize just what a big-deal activist he was till later. This is a lawyer who took on the City of Detroit to fight for wheelchair users to have a right to accessible public transportation, jobs and stores; he won. He's traveled around Michigan, fighting to protect special ed programs and services. He charges no fees for these sort of cases. Oh, and he's been blind since birth.

Here's an interview Anderson Cooper did with him:


Richard Bernstein was one of the keynote speakers. Thing is, the man didn't simply speak. He talked in CAPITAL LETTERS and exclamation points!!! He was full of enthusiasm, encouragement and extreme inspiration. He told the story of a new mom of a blind child who called him and asked, "Will my son ever be normal? Will he be ordinary?" Richard's response: "He won't be ordinary—he'll be EXTRAORDINARY! He'll bring out the best in people he meets!!!"

My heart started doing a happy dance. Richard was just warming up. "I feel BLESSED I was born a disabled person," he said. "Everyone in this room is searching for their purpose. The way I was created lead to my PURPOSE and PASSION and my MISSION!"

He talked about fighting for change, and the work he's been doing. When he mentioned that he'd run the Ironman Triathlon, I was thrilled...but not completely surprised. He's preparing to run the New York City Marathon in a few weeks. As he said, "The spirit can overcome the body, the spirit can overcome the pain, the spirit can CARRY YOUR BODY ACROSS THE FINISH LINE!"

YES!!! I thought, because by now I was thinking in capital letters and exclamation points. Max's spirit has proved to be a major strength. It's the one thing the doom-and-gloom doctors couldn't have predicted: that my child would have the determination to work around his muscle stiffness. And that my child would have the determination to articulate words. And that my child would do it all with the world's biggest grin.

Richard's parting words: "Disabled people might look weak, but make no mistake. Disabled people are THE most STRONG, RESILIENT FIGHTERS you will ever come to know!!!"

I'd gone to this conference because I thought it would be interesting. I walked away more revved than ever to spread awareness about our kids—and inspired about Max's future like I've never been inspired before.

I hope Richard's spirit inspires you, too.

Saturday, October 23, 2010

Stuff Worth Knowing About, 10/23 Edition


• Dana over at Uncommon Sense has an interesting take on the Welcome To Holland poem.

• Whirlpool is giving away a double-oven range; enter to win through November 30 at Whirlpool's Institute of Kitchen Science Facebook page, on the "Enter Sweepstakes" tab.

• Janis over at Sneak Peek At Me snapped the cutest photos of her little boy, Austin, in a pumpkin patch.

• If your kid has a cool idea for a toy, enter it in The Toy Shop Challenge, sponsored by Sears and By Kids For Kids. Winner gets a $1000 Sears gift card and a trip to New York City (with a parent, of course).

The American Specialty Hockey Association offers teams for kids with special needs; I'm looking into it for Max.

• Kidfresh is running a Halloween contest; post a photo of your kid in their costume by Friday November 5 and you could win a Flip MinoHD Video Camera. Enter on the Kidfresh Facebook page.

• You can still enter to win those two supercute Halloween buckets from McD's and the Apple Dippers treat.

• The car wash costume is coming along; I am getting a little overly excited about it. Even though Max SAYS it's what he wants, will he actually get into it? My friend Lyla had this suggestion as a backup:

Friday, October 22, 2010

An ad campaign for kids with special needs? Bring it on!

This is Tanya Kiewitz, a 35-year-old graphic designer who's appearing in an ad for CAP48, a nonprofit that raises awareness about disability issues in France and Belgium. The copy reads, "Look me in the eyes... I said the eyes." The ad's getting major buzz in Europe, and now here.

"They see that I am above all a woman and can be beautiful and sexy, and that disability is secondary," Kiewitz has said.

A-MEN.

That is exactly what I want for Max (well, minus the "sexy" part): for people to look at him and first see a great kid, not a Kid with Disabilities.

You know, I'm thinking our kids need their own ad campaign. Although I'm not sure how Max would feel about posing in a bra.

I could see a whole "Suck it!" campaign:

Suck it, cerebral palsy!
Suck it, autism!
Suck it, Down Syndrome!
Suck it, PDD!
Suck it, Tourette's!
And so on.

I am a little stumped as to what the visuals might be.

OK, then, so how about:

I am Max. I am NOT cerebral palsy.
I am Sarah. I am NOT Down Syndrome.
I am Leo. I am NOT autism.
And so on.

Whaddaya think?

Thursday, October 21, 2010

Halloween giveaway: Win two super-cute Halloween buckets and a sweet treat

Last year, Max hijacked a Halloween bucket. Well, OK, the guy who answered the door with the purple pail willingly gave it up, after Max hyperventilated in delight.

As with many things in our house, I have no idea where that pail is, but I did get these two supercute ones from the nice people at McDonald's.

The Happy Meal Halloween pails are based on the McDonald ones from the mid-80s, some of which are collector's items on ebay. I fully expect mine to become collector's items as well once they disappear into the black hole that is my home and we find them thirty years from now. The buckets have removable handles you can use as masks and come with Mr. Potato Head stickers, which the kids had fun sticking on. Bonus thrill: I heard Max say "oh-ay-oh" (potato).

McD's is giving away two buckets to five readers—for the kids, for you and your child, for your husband and your child, for your ferret and your child, whoever you please. They're also tossing in a coupon for Apple Dippers. Sweet!

To enter, just leave a comment below about a favorite Halloween memory. One of mine: The Halloween night a couple of years ago when Max was so mesmerized by a skull that lit up on a neighbor's porch, we had to sit there for a half hour.

Bonus entries: 

Follow Love That Max on Twitter
Tweet about this giveaway: Win two super-cute Halloween buckets and a sweet treat from @McDonalds, ends 10/24, http://tinyurl.com/28vnnbn  
Like Love That Max on Facebook

This giveaway is open to U.S. residents and ends at 11:59 EST on Sunday October 24. Please leave your e-mail if it is not visible on your blog. 

Update: The winners are Cristina, Sarita, Beckytag, Amyd and Brenda. Enjoy!

On making bad jokes about special needs


Tonight, I went to a great party for the launch of Cool Mom Tech. Let me just qualify that: ANY Wednesday night when I am out of the house and mingling with adults automatically qualifies as a "great party," except this party was exceptional. It was in a beautiful New York City loft and there was cutting-edge tech stuff by Logitech to check out, nonstop passed appetizers and a tasty drink involving Hendricks gin, cucumber and chamomile.

I got to talking with a couple of bloggers about how much attitude five-year-olds can have. "You wouldn't believe some of the stuff that comes out of my little girl's mouth," I said.

"And how about your son‚ does he get obnoxious too?" one of the women asked. She knows Max has special needs, though she doesn't know him well.

"It's not a problem because he can't really talk!" I said, and started laughing.

She half-smiled.

[Awkward pause.]

I blame the gin  delirium from going to sleep at 2:00 a.m. for the last two nights the pure human need to sometimes make light of Serious Things.

Was it an awful thing to say?

And now, since it is 1:08 a.m. and I am out of steam and gin and bad jokes, I am crashing and turning this over to you.

If you are a parent of a typical kid: How would you feel if I joked about my kid's disabilities?

If you are a parent of a kid with special needs: How would you feel if I joked about my kid's disabilities?

Wednesday, October 20, 2010

Stock responses to rude comments



Some of you have been witness to some obnoxious comments on this blog over the last few months. I don't want to waste any further time or energy dealing, so I've come up with some pre-written responses I can grab when the occasion strikes. Kind of like Hallmark cards, but not. I'm not saying I'll never again toy with a rude remarker, though I'll now have the option of simply plopping in one of my Stock Responses To Rude Comments™. Feel free to borrow! Or add your own! And now...

STOCK RESPONSES TO RUDE COMMENTS™

Sticks and stones may break my bones but you use split infinitives and commas in the wrong places.

Um, hello? I'm not blogging about cupcakes over here.

Read between the html: < div < i> italic < YOUARENOTVERYBRIGHTAREYOU< i >/div >

Na na na boo boo. [Sticks tongue out, inserts fingers in ears and wags]

Attila the Hun called; he wants his comment back.

I know that html is incorrect. You've just confirmed you're far less bright than I'd suspected.

Wow, that was mean, Mr./Ms. Mean Meanypants.

NOT LISTENING NOT LISTENING NOT LISTENING NOT LISTENING NOT....

Thanks very much for your opinion. I regret to inform you that it sucks.

Yo mama can't blog.

Tuesday, October 19, 2010

The trouble with public schools



Dropout factories: Public schools in which about 40 percent of students drop out.

The Lemon Dance (also known as Pass the Trash and The Turkey Trot): Nicknames for the annual ritual around the country in which schools pass off bad teachers—protected by tenure—to other schools.

Lottery: The completely random method by which children's educational fates are decided every year.

These are just some of the terms I picked up from Waiting For "Superman," the big-buzz documentary that examines public education in America. And, boy, was it an education. The movie paints a bleak picture of substandard schools, inferior teachers and bureaucratic insanity. The title of the movie comes from something Geoffrey Canada, a social activist and educator, reveals early on: As a kid growing up in New York's South Bronx, he kept waiting for Superman to rescue him.

The film was directed by Davis Guggenheim, the genius behind An Inconvenient Truth. It centers around five kids and their parents, who have entered a lottery for a charter school. Four of them live in impoverished urban areas. I expected to see parents who cared, and I did, but was especially touched by how even young children understood that a good education is their ticket to a better life. One fifth-grader in LA, Daisy, already knew which college she wanted to go to, and had contacted them.

Want to know the grim statistics? This movie's got them, galore. Among 30 developed countries, the US ranks 25th in math, and 21st in science. The rays of hope in this film come from the innovators profiled. There's Geoffrey Canada, the man behind the highly successful The Harlem Children's Zone, who tells it like it is ("You can get tenure if you can breathe for two years."). I silently cheered Michelle Rhee, the public schools chancellor of the District of Columbia, who fired more than 200 crappy teachers (and who, sadly, resigned last week). And I wanted to meet Mrs. Burk, the rapping math teacher. Heck, I wanted to take her class.

I saw the movie with a friend; K12, a company specializing in online education for grades K to 12 and a proponent of accessible education, paid for our tickets. My friend and I both walked out of the theater distraught about the state of our schools. "How strong the country is 20 years from now will largely be driven by this issue," Bill Gates says in the movie.

Scary.

Max is in private school, for now. I've been thinking about the potential of an inclusive class, but he's doing so well, it doesn't seem like the right time to switch. Besides, after our state had drastic school budget cuts, they replaced all the aides with hourly-paid ones, and there have been concerns about quality.

In general, the public schools where we live are considered good. Not great, but good. I'm realizing we're lucky—lucky, compared to what the families in the school have to contend with.

How are the schools in your area?

Monday, October 18, 2010

Thrilled to be a Lunch Lady


Like fingerprints and snowflakes and tantrums, no two motherhood experiences are alike. Mine is very different than my mother's was. For one, I have a boy and a girl; she had two girls. I work; my mom didn't until my sister and I were in high school. I have many more conveniences; to this day, Mom doesn't even own a microwave. And, yes, I am raising a child with special needs; she raised two typical kids (well, whatever "typical" means).

Despite the differences, I've savored a lot of the same joys she had, along with bliss my mom never knew—like watching a child who you were told might never walk take that first step. Sometimes, though, I wonder if I'm missing out on stuff she got to experience. It's not something I feel mournful about; I just wonder. So I got really excited when Sabrina's elementary school asked parents to volunteer for lunch duty. My mom did that at my elementary school. I still remember how much I loved seeing her there, especially when she'd slip me extra pizza squares.

Friday was my first round as Lunch Lady. I was one of five, and none of us had to wear our hair in a netted bun, though we did put on plastic gloves. There were no Lunch Guys on hand to dish out grub, but I'll bet that would change if they set up a couple of barbecues on the lawn. I also think it would be awesome if they had Make Dinner For Your Family Lunch Day. Like, couldn't they teach the kids to assemble a lasagna at lunch and send it home with them? Or perhaps chicken a l'Orange? Something?


Sabrina, who's gotten a bit blase at the ripe old age of 5, kept talking about my visit all week long. She literally jumped up and down when she walked into the cafeteria/gym and saw me standing at the lunch table. "THAT'S MY MOMMMMMMY!" I heard her yell. I felt like such a celebrity.


We were both distracted during lunch. She kept bouncing over to me, or I'd walk over to her table to say hi or give her a hug. Suddenly, though, there were a dozen kids standing by the drink area, waiting for water, and hordes of kids coming in. Remember that I Love Lucy episode where she's at a chocolate factory and she falls behind and she's frantically trying to keep up? That was me, except with a big jug of water in my hand and a bunch of plastic cups in front of me. I splashed a couple of kids' shirts but they didn't seem to care and luckily, I didn't get fired.


Here she is with her bff. Incidentally, yes, Sabrina is still wearing Max's clothes. And short sleeves. I literally had to hide her shorts, given that it's getting chilly here. I have resorted to paying her—yes, paying her—to wear dresses, like the other day when we went to a friend's party. One buck. One of these days, she's going to start charging me more, and accepting major credit cards.

I'm going to volunteer at Max's school this year, too. I'll be going on a couple of class trips, and I signed up to help coordinate the Valentine's Dance. Kids at his school eat lunch in their classrooms, assisted by aides, so no Lunch Ladies needed there, alas.

I was at Sabrina's school for just an hour, but it made my whole weekend. Not just because I got to pitch in and see Sabrina in action, but because for a short burst of time, I was doing something my own mom had done.

And it felt good.

Friday, October 15, 2010

Halloween Giveaway: Win a Dunkin' Donuts gift card, coffee and bags

I don't have that many addictions in life—not ones that will kill me or land me in jail, anyway. So in the scheme of things, I'm fine with my Dunkin' Donuts iced coffee codependency. Dave gets me a cup every morning, right after he drops off Sabrina at the bus stop, and if there was ever a way to keep me happy, this is it. I suspect he's partly motivated by self-preservation; Caffeinated Me in the morning is far, far sweeter than Uncaffeinated Me.

I just need one big cup of iced coffee a day, year round, and I am good to gooooooo. You'd never want to see me on two cups of coffee a day, I already talk far too fast and get far too peppy.

Happily, the Dunkin' Donuts powers-that-be asked about doing a giveaway. Two readers will win one the above trick-or-treat bags packed with goodies, worth approximately $40 each. It includes a $31 gift card to Dunkin' Donuts, a pound of Dunkin' Donuts coffee, and another trick-or-treat bag so your kids don't have to fight. And if they fight over the Dunkin' Donuts coffee, I think it's time to introduce them to chocolate milk.

To enter, just tell me your favorite flavor of coffee. Mine: Hazelnut. I-c-e-d.

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 $31 @DunkinDonuts gift card, a bag of coffee and Halloween bags from @LoveThatMax, ends 10/23, http://tinyurl.com/38vh4ax
Follow this blog on Blogger.
Like Love That Max on Facebook.

This giveaway is open to U.S. residents until 11:59 p.m. EST on Saturday October 23. I'll pick two winners via random.org, announce them here and e-mail you.

Good luck!

Disclaimer: I received no iced coffee in exchange for this giveaway. Damn.

Update: Wow, you people sure need some coffee! The winners are Sarah and Marcia Goss. Cheers, ladies!

The beautiful bodies of Blogalicious

I had so much fun checking out other women at Type-A Mom, I had to do it again at Blogalicious. It was a great weekend: My writing workshop went well (read, nobody threw tomatoes), I made a bunch of new friends, and I got a chance to roam around South Beach (if you're ever there, David's Cafe Cuban Cuisine is fantastic). Once again, I missed the kids and Dave, but I wasn't away for that long this time and Dave kept them happy with pumpkin picking, Build-A-Bear, a haircut for Max (who now enjoys them) and countless French fries.

I love celebrating the variety of shapes and sizes at these conferences, glorious proof that there is no one "right" body type. See for yourself!

Kimberly C. Ellis, aka Dr. Goddess; how could I not put her first?!

Melanie Edwards from Modern Mami (due in December)

Left, LaShanda Henry from Sistasense and Onica Cupido from The Mommy Factor (thanks again for the tech tip, LaShanda)!

Kim from I'm Not The Nanny (who did an impressive Kenmore spring rolls demo and who witnessed me trying Just Dance and who might have, I suspect, secretly videotaped me for future blackmail)

Amanda Rodriguez from Parenting By Dummies (I hate to ruin her ruse but she is super-smart and a great writer)

Lovelies Lorraine Sanabria Robertson from Ask Wifey
and Tanya Seavers Evans from Style Strategist

The charming Maura Hernandez from Cafe Magazine
and The Other Side of the Tortilla, who showed us

Takeyah A. Young from Core Connection Lifestyle,
who inspired outfit envy

Patrice Elizabeth Grell Yursik of Afrobella,

And my adventures-in-sushi-and-gelato pals Deirdre from Savvypreneur and Toni from Wine With Toni, super-fun ladies who fly.

OK, so I'm considering getting into Just Dance, which I tried at the Clever Girls Collective party on Saturday night. It's so entertaining, you never even notice you're exercising. Which is exactly what I need until someone invents a machine that exercises you while you sleep. Could one of you please get going on that?

What kind of exercise have you been doing lately? *

* It's OK to say "Er, nothing."

* That is my answer. Unless you count my mad dash for the train home today and the 10 minutes I spent doing Just Dance last Saturday night. I am quite sure it effectively wiped out the chocolate-dipped churros I'd consumed for lunch.

* I know I need to exercise more, Mom.

* Churros are really, really, really good.

Thursday, October 14, 2010

Kids With Special Needs Around The World: Chile



I've known Sonia Castro for a while now; she is a smart, strong, outspoken voice for our kids, the woman behind the popular Mama Terapeuta blog. Over in Chile, she's a columnist for a parents magazine, the author of the book Mama Terapeuta and one amazing mom. I'm glad to feature her in my series on kids with special needs around the world. Get ready to be floored by what she has to say—and to really, really appreciate the services our kids get in this country.


When I first knew that Ellen was featuring stories around the world I said: I HAVE to write to her! Because so many times I've wanted to yell while reading her blog something like "You are so incredible lucky!" and explain how different things are where we live. So, here is our story.

My 6-year-old girl has cerebral palsy and severe disability. The worst part is that we live in Chile, South America. I would love to say "No, we don't live in trees! We are much more civilized than people think" but when it comes about disability, we are in caves. Almost literally, because here people with disability are still in their home or care homes, we are in square one about social integration. We have relatively good laws about it but what are they good for if no one cares? It's dead letters.

IEP? Early Intervention Program? Insurance? Nope, none of that here. In Chile, 13% of the population have a disability and the State gives no support what so ever. Well, I'm lying... They can apply to get some funding for equipment and they can try to get their TAXES discounted! Yay! Did I mention we have to buy from other countries almost anything? It's complicated, special equipment is already expensive; consider the average salary in Chile is around USD $800 a month and shipping always doubles the price.

As you can imagine, rehabilitation is left to charity. We have a big Teleton once a year, lots of people crying and sad stories, and society gets to feel like they do so much for people with disabilties. Health insurance does not cover rehabilitation, which is why for us doing something alternative like ABR is much, much cheaper than traditional and private therapy. Yes, I am aware we are upper middle class so we can afford it, but that only makes me angrier because so many people don't get to choose.

But there is more than rehab in our lives. What about education? "Oh, dear, she is in this world just to share her joy with that beautiful smile"—I've heard so many times. We have about 200.000 under the age of 15 with a disability and almost 70% of them go to a special school, where the program usually sucks (by "sucks" I mean they don't even try to teach them reading and writing). We are not even at that point where "severe" cases go to special ed, but almost everyone!

My daughter is due for first grade so this has been my lastest battle: find her a "regular" school, because I don't care what people may think, I know she can learn. That's why I love to be in touch with people from other realities, where children with disability are actually given opportunities, I've even read books writen by young people with CP. And guess what: My daughter has already learned to write! So yes, she can! But I don't even remember how many schools I've contacted, how many times I've heard "no". Who knows, maybe we'll be moving to Canada or the States just to find a school :)

Universal design? Don't get me started... I've been started a small movement called 'Plazas Para Todos' (Inclusive Playgrounds) to try to spread the word about inclusive playgrounds  that I think would trully help integration from early ages. So far, only 15 playgrounds in Chile are accessible. Did you know that Chile is a long line next to the Pacific ocean? We have hundreds of beaches and not one of them is accessible.

You can name it and we are far behind. So here are our choices: 1) move 2) accept it 3) try to change it. I know we cannot change the world nor our country, but we are definitely going to try and do our best. I have my blog, Mamá Terapeutato connect with others, with and with out special needs, and I wrote a book that got us thru the media, I even went on CNN

Chile is still on square one with social integration. There is so much to do and it has helped me a lot to be able to communicate with other moms around the world. It helps to know that it IS possible, so keep on sharing and aiming for the best for our kids!

Wednesday, October 13, 2010

The woman who stole the show


"So, what did you think when you saw the woman in the wheelchair?" I ask Dave.

We're driving home from New York. Tonight we went to see Wicked, a wildly entertaining musical that's the "untold story of the witches of Oz." I'd gone to an event a few months ago, and had gotten two free tickets. Wicked's about friendship and popularity and pretension and green skin and love and power and evil and good and, oh yes, glittery shoes. The Wicked Witch's sister, Nessarose, is paralyzed. As drawn in as I was to the show, I was a bit distracted by her.

"I was definitely noticing her, I felt a connection," Dave says.

"Me, too," I say.

The two of us view the world through a different lens than other couples we know. We notice people with special powers. We feel something for them, a certain relatability. But I tend to look into things way more than Dave does.

"So why is it they HAD to get into how she felt the guy couldn't love her because she was in a wheelchair?" I say.

"Uh-oh, here we go," Dave says.

"Nessa was gorgeous. Do you think they'd EVER cast a person in a wheelchair to be Glinda the Good Witch? Doubt it. And if they did, they have to work it into the plot somehow. Like, you know, Glinda got into a car accident or something. Because they always have to call attention to the person's DISABILITIES, they can't JUST be gorgeous or good singers or talented actors. In the movies too."

"Um, honey? It was a great musical," Dave says, sweetly.

"Definitely. And they probably wouldn't make the Wicked Witch a woman in a wheelchair either because they'd be all, 'OHHHH, NOOOOO, we can't make a person with a disability look BAD.' And I am SURE they'd never cast a person in a wheelchair as a MUNCHKIN because that would be too much atypical-ness in one wheelchair!!!"

By this point, I have worked myself into a tizzy and need to be quiet, which I am sure Dave does not mind.

My head keeps spinning. Now I am picturing Max as the handsome lead guy, and thinking, "Nope, wouldn't happen, nobody would be able to understand him."

Then I start laughing.

"What?!" Dave says.

"I've got the perfect Broadway show for Max to star in: Car Wash, The Musical!"

How amazing would it be to see an actor or actress in a wheelchair starring in a Broadway show that has nothing to do with disabilities?

Photo/Joan Marcus

Tuesday, October 12, 2010

Why I DON'T want to accept the cerebral palsy


It's taken me a long time to come to terms with the challenges Max has as a result of the cerebral palsy. Last week, though, I realized I'd better quit being so accepting.

It started with my niece's one-year birthday party on Sunday. My sister was having it in a big event room with 50 guests, and Max typically hates crowd. I'd resigned myself to the scenario I envisioned: He'd wail and screech and want to leave. "I'll hang out with him in Judy's apartment," I told Dave.

Except here's what happened:





I mean, he even did the limbo.

Then Dave took Max for a haircut while I was away over the weekend. We figured Max would get upset, but his hair has become a vision hazard and Dave volunteered to handle the usual haircut meltdown.

Except here's what happened:


And then, last night, Max was roaming around naked before bathtime. I've made peace with the fact that we're in for a long haul before he'll potty train. We've tried, but no interest.

Except here's what happened:

Max wandered into the bathroom and pointed to the potty seat. We put it on the toilet, plopped him on it and he peed. At which point I performed my world-renowned "Max peed in the potty!" dance, coming soon to DVD.

My level of excitement—and surprise—at these events tells me something. To be sure, the accomplishments are worth woo-hooing about. But the thing is, I have gotten so complacent about Max's disabilities that I am bowled over when he surpasses them.

When he was a baby, I refused to accept. No, I didn't really have a kid with cerebral palsy and maybe it wouldn't even show and please please please let him be OK. As he got older, I did battle with the cp. I massaged Max's stiff little legs and arms, and got down on the floor and showed him how to crawl, and then I helped him move his arm and leg and arm and leg to get him to crawl.

But surprised? No, I wasn't surprised when he finally crawled on his own and took steps and walked.

Now Max is 7, almost 8. And I'm getting a little too astounded by his progress. I think it's because I've accepted the cerebral palsy. I've drunk the special needs Kool-Aid. Yeah, my kid has brain damage and his muscles are somewhat messed up but he's walking and he talks in his own way and he's using both his hands and he's doing amazingly well for himself and yes, he's super-cute, thank you.

And yet.

This acceptance has done on a number on my expectations. It's neutralized them, so I no longer anticipate accomplishments, though of course I celebrate them when they happen.

I need to rip my head and heart out of this complacency rut and realize that Max is going to keep getting the best of the cp month after month after month. There is much to look forward to.

Max deserves that anticipation.

Screw you, cerebral palsy. I'm not going to accept you.

Monday, October 11, 2010

The Halloween insanity lives on!


So, The New York Times' blog, The Motherlode, ran a post about the wacky response I got on my piece for Redbook magazine. It happened Friday, while I was at the Blogalicious conference in Miami to run a workshop on great blog writing/ticking people off (OK, it was just about blog writing).

The gist of the Motherlode post: People can say some pretty insulting things online. Dave, who rarely pays attention to stuff happening in the blogosphere (ONE of us has to not be addicted to it) e-mailed me in the morning: "Honey, you're in the New York Times!" His boss had let him know. Excitement!

But as the weekend passed, I was a little bit astounded: Commenters were being insulting all over again. One mom accused me of writing the article to get compliments on my parenting; other posters seemed to be completely and utterly oblivious to the fact that my entire reason for doing Halloween in a different way was because of Max's special powers.

I don't expect every single person to agree with what I write, nor do I expect special treatment by commenters because of Max's cerebral palsy. I do expect some understanding that I approach life in out-of-the-ordinary ways to accommodate his needs. I couldn't help myself; I wrote a comment saying that it was irksome when commenters with "pumpkin puree for brains" didn't get it. Oops.

I'm lucky, I know, that this blog is basically a nice place to live, as are most of the blogs about raising kids with special needs. Negative, insulting comments bug the crap out of me.

Meanwhile, I need to get my butt going on that car wash costume I'm making for Max. What are your kids going to be for Halloween? And trust me, if you say they're not going to wear a costume when they go trick or treating, I WILL NOT CARE!!!


Photo/minipixel


Saturday, October 9, 2010

Heads up on a new talk show (and more awareness for our kids)


Last week, I got invited to a luncheon to talk. Given that I can be quite the blabbermouth, especially when encouraged, I was excited. Even better: It was a luncheon for The Talk, a CBS show debuting October 18 about topical issues seen through the eyes of moms (think mom version of The View). Best of all: I'd be dining with the co-hosts—Holly Robinson Peete (a major advocate for kids with autism), Sharon Osbourne, Marissa Jaret Winokur, Leah Remini, Sara Gilbert and Julie Chen (all advocates for speaking your mind).


A preview of The Talk:


In person, every one of the women looked just as fabulous. Sharon Osbourne is surprisingly petite—about my height (5'2") in heels (I guess her huge personality makes her seem taller). The women are all really funny. And they all have big mouths, but in the coolest of ways. Who wants small mouths on a talk show?

There were about 10 bloggers there, and the co-hosts were genuinely interested in hearing what we wanted to see on the show. Holly Robinson Peete mentioned she'd be touching on special needs (yes, awesome). I should have asked if Max could be a guest one day—he could be an expert on car washes (his current obsession, as many of you know). Sabrina wouldn't be a good contender, given her track history meeting celebs.

We discussed working mom guilt, kids bullying kids, man-bashing. We heard about the time Marissa accidentally locked her little guy in the car, and how beyond ticked off Sharon Osbourne was the day she found out a kid had given her girl Kelly drugs. She basically threatened to "chop off his willy," said in that Sharon Osbourne way. That maybe made me a wee bit scared of her until afterward, she spontaneously gave me a hug.

Obviously, we get all sorts of good discussions going on our blogs about raising kids with special powers, but if there's the possibility of airing these concerns—AND celebrations!—on national TV, that would be pretty damn fantastic.

Which issues about kids with special powers would you want to hear discussed on The Talk? Or just issues about life as a mom? One of the things I'd love them to bat around is how parents of kids with special needs can help integrate their children into the mainstream—and how parents of typical kids can better help their kids mingle with ours. That video of the Florida dad who went commando on the bus where kids regularly teased his little girl with cerebral palsy would have been a great launching point for a discussion, though it'll be old news by their air time.

The Talk wants to hear from moms, and I'll be sending your suggestions their way, so please share!

Photo/Dawn Sandomeno



Friday, October 8, 2010

Motherhood got me out of a parking ticket. Oh, joy.



Yesterday morning, I was running around doing a bazillion errands; I'm speaking at Blogalicious today, and had to fly to Miami. (And, yes, this after the tsunami of guilt I experienced at the last blog conference). I left the car parked illegally with the blinkers on to run into the shoe-repair store. When I came out five minutes later, a traffic officer was standing in front of my car, arms folded across his chest.

"I'm sorry," I blurted.

"Don't be sorry!" he said. Pause. "I waited for you. I knew you were a mom. And you are!"

Er, wha?! I mean, I was driving a minivan, I was wearing sweats and I did have my hair in a ponytail, but, whoa. I would have rather gotten the ticket and be told I looked like Eva Mendes.

It's official: I'm mommified.

The officer was being kind and all, so I couldn't really complain or try to sue him for defamation.

But he wouldn't stop talking.

"I wouldn't be caught dead in that car," he informed me.

"Oh, my husband loves it!" I said.

"What kind of guy are you married to?!" he asked.

I feared he might start insulting the kids next, so I politely excused myself and drove home. Then I took a flight to Miami, met a lovely woman, Toni, on the shuttle bus to the hotel, and went out for 11:00 p.m. wine and sushi with her and her pal Deidre tonight. Wild and crazy, eh?

If only that officer could have seen me.

Wednesday, October 6, 2010

The girl who used to fix toilets

For weeks, the toilet in my bathroom sounded like it was on the verge of exploding. Trickling sounds came constantly from it, along with the occasional hiss.

I kept having magical house thinking about that toilet—you know, the hope that if you just ignore something broken in your home, it will somehow repair itself.

Nope.

Dave isn't exactly handy, nor do leaky things bug him. I could place twenty hissing toilets in our bedroom and he would sleep right through it. I kept thinking I should call a plumber except I didn't want to shell out for one. Then my mom came for a visit this week. She heard the toilet. "Honey, remember how you used to fix the toilet at London's?" she said.

London's was a community where I spent my summers as a kid—what's known as a bungalow colony. We rented a glorified version of a shack for two months, went to day camp, hung out in the big community pool. The toilet in that cottage was always breaking and I was the one in my family who'd deal with it.

I'd forgotten about that, along with the fact that I used to fix all sorts of things. Countertop appliances, clocks, broken drawers, whatever. I loved to tinker and I found it really satisfying. I was good at it.

What happened to that girl?

I know I have a whole lot less time these days, but I also think that part of my spirit has gotten a little worn down. The act of fixing has consumed my life since Max was born; I've spent the better part of the last seven years building him up. I adjust, re-adjust, try something new, hold my breath and hope it'll work. There are no quick fixes, no shortcuts. It takes time and focus and fervent please, please, please work pleas.

I have been so immersed in Max's challenges—some of which I will never, ever be able to fix—that I'd forgotten I actually am capable of fixing certain things.

Not my mom. She knows all about the girl I used to be, and she still sees that in me.

I cocked my head at her. "You're right," I said. "I am going to fix that sucker."

I Googled, checked out diagrams, marched into our bathroom and messed around with the handle, the overflow tube, the big, black, rubber bobbing thing. Fifteen minutes later, I'd fixed the toilet. And I felt damn proud.

I've still got that girl in me.

Photo/istock

Tuesday, October 5, 2010

A day of doing good with Save The Children and Jennifer Garner


Today, I got to help out kids in need, teach my little girl about doing good, meet one of the people who runs Save The Children, chat with Jennifer Garner, hang with some lovely mom bloggers and—bonus thrill!—stand in a building lobby and argue with Sabrina about her tights and shoes.

Lately, I've been thinking about how I can teach the kids what it means to help other people, so I was glad to get invited to this event. Max wouldn't have done well with all the hustle and bustle, so our babysitter met me there with Sabrina. She immediately demonstrated that she understood the true spirit of the day with this declaration: "I don't WANT to wear tights! And I want to wear SNEAKERS NOT SHOES! And I WANT to take them OFF!" We talked a little bit about her uncharitable tone of voice, then I removed her tights right then and there in the lobby, shoved them into my bag and we got on with the day.


First, a nice lunch and mingling with Colleen from Classy Mommy, Audrey from Mom Generations, Lisa from New York Chica, Jennifer from Savor The Thyme, Vera from I'm Not Obsessed, Winnie from Healthy Green Kitchen and Kate from The Parsley Thief. I can't remember all of their kids' names, but they were cute, particularly so since none of them were badgering their moms about their legwear.


Sabrina, at her most charming.


The kids painted plates. Sabrina is very creative about coloring and Jennifer Garner, who's totally sweet and real, noticed.


Jennifer: "Wow! That's a great design!"
Sabrina: [silence]
Jennifer: "Oooh, I can see you made dots inside your dots over there, how did you do that?"
Sabrina: [silence]
Me: [OMG]

video

Then it was time for the heart of the event. Here's Mark Shriver, Senior Vice President of US Programs for Save The Children, explaining what we were about to do as Jennifer Garner and Marty O'Gorman, the general manager of Frigidaire (props to them for their $250,000 commitment), stood by.

Afterward, parents and kids filled snack boxes with pretzel sticks, granola bars and bottles of water.
Sabrina: "But I don't LIKE pretzels!"
Me: "Honey, remember what we spoke about? They're not for you, they're for kids who need food."
Sabrina [showing a streak of altruism]: "What if they don't like pretzel sticks? Can we get them French fries?"


Jennifer, clearly a woman who likes a challenge, stopped by our station.

Jennifer: "Hi! You made that nice plate! What's your name?"
Sabrina: [silence]
Jennifer: "OK, I'll guess! Is your name...Purple?"
Sabrina: [giggle]
Jennifer: "Is your name...Freckles?"
Sabrina: [giggle]
Jennifer: "OK, what's your name?"
Sabrina: "SABRINA!!!!!!!!!!"
Jennifer: And how old are you?
Sabrina: "FIVE!!!!!!!!!!"

Score one for Jennifer! We joked about little-girl birthday parties and the perils of the princess phase, and then Jennifer kept mingling.


Tonight, Sabrina and I continued the conversation about helping out other kids. First, we went to Frigidaire to set a place at their virtual kids' table. Each time you do, the company will donate $1 to help get children access to nutritious food (you'll also be entered to win prizes). Then we put some money into the tennis-can fund we recently started for charity.

Sabrina is still interested in getting kids' French fries. Meanwhile, I'm going to look into the possibility of taking the kids to pitch in at a soup kitchen or shelter; I called a few last year around the holidays, but they said Sabrina was too young.

It was a very, very inspiring day; I know it had an impact on Sabrina, too.

And I suspect Sabrina left a lasting impression on Jennifer Garner.


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