Tuesday, August 30, 2011

Emergency preparation for kids with special needs (and nightmare scenarios)


When I go on a Max anxiety binge, as I do from time to time, I picture what would happen if there were a major emergency in our area (or in the entire country) and medical supplies ran low. Emergency preparation for kids is something a lot of parents think about, but when you have a kid with special needs, you think about it a whole lot more. You have to.

Max is on Trileptal (oxcarbazephine), to prevent seizures; without it, he'd surely have them regularly. This is how my nightmare goes:

Something awful happens—major earthquake, tornado, terrorism. Pharmacies run out of medicine. There is no Internet access, so I am not able to put out pleas for some. Soon, our supply of Trileptal is gone and Max has none left in his body to protect him from seizures.

My nightmare stops there, as it would be far too terrifying to imagine what could happen next. In reality, we have a five-month supply of Trileptal sitting in a kitchen cabinet. We have wills in place, with designated guardians (my sister and her husband). Dave's sister and her husband are good people, but that's about all the family we could count on. My mom's elderly. Dave's mother and her new spouse...ummm...I'll just heed that saying, "If you don't have anything nice to say, don't say anything at all."

With all the media reports that made it seem as if the world might end with Hurricane Irene, I had some Max anxiety. As it turns out, though, he wasn't effected. He eats a lot of cooked foods that go by the name of "spaghetti" and we got our power (and stovetop!) back on relatively quickly. I know that some kids with special needs can get wigged out by disrupted routines, but Max has been downright gleeful about sleeping in a motel. Therapists haven't been able to make it to the house because of closed roadways, but other than that, we're fine. No purple stuff was destroyed in the basement flood.

There's one major emergency prep thing I've been meaning to do. A few months ago, we went to a "Planning for the Future" seminar at Max's school. The presenter, who specializes in estate planning for kids with special needs, talked about having a "Letter of Intent"—a document that details all sorts of information about your child, in the case that both you and your spouse die and he is left with caregivers. The document had places to fill in doctor and therapist info, medical history, skill levels and more, an even a reminder to attach an IEP. It's on my (long) list of stuff to tackle; if you'd like me to email you a copy, just say so.

Ever have those disaster scenarios running through your head? What sort of preparations have you made for your kids in case of extreme emergency?


Hurricane Irene, soggy school supplies and smiles

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We fled Irene and went to a friend's place, so we weren't sure what to expect coming home. Our neighbor had looked in through our basement window and said it was flooded, but she couldn't tell how much.

Meanwhile, we'd been seeing down power lines and serious flooding in the area where we were staying.
Yep, that's a person standing there. It's a street, not a pond.

A lot of people were saying reports of Irene were greatly exaggerated. The media did make it out to be Armageddon, and it could have been so much worse. But there was some serious flooding and damage in my neighborhood.

Downtown

Where we shop for groceries

The underpass for the train I take to work. It completely filled up with water, and it's about 10 feet high. Creepy.

Our local Home Depot; it still hasn't reopened.

Getting home (we were about 1 & 1/2 hours away) proved to be quite the adventure; every time we tried a new route, some road was closed. The navigation system, which we are totally codependent on and which has surely saved our marriage more than once, wasn't doing us any good. "There's no way back right now!" a police officer at one roadblock informed us.

Then we stopped to get some drinks at a deli, Dave got into a conversation with a fireman, and he told us to go way west to head south. And it worked.

Our neighborhood looked like a mess—there were limbs and branches everywhere—but peaceful and calm in the sunlight. Our basement was a wreck. We have two halves, one finished and one unfinished. There's a sump pump in the finished half. The electricity went out. No sump pump.

Luckily, the water that flooded in had receded, and that was seriously lucky. Also, I had a lot of my father's stuff on the basement floor, and we got it to higher ground before we left. And the hot water heater was still working.

But the water got high, about a foot or more, and a lot of stuff got ruined.

I couldn't believe it when I saw the bottom part of the sofa was sopping wet.

One of the saddest things of all was Sabrina's school supplies. I'd actually found every single thing on this crazy-long list of stuff teachers had requested. But I left the bags sitting on the floor. Dripping wet notebooks, pencils, folders, you name it. Back to Staples I go.

We've been throwing out bags full of unsalvageable stuff (way to declutter!). We need one of those water damage companies, but their lists are hundreds of names long. It would be a good start to have a bunch of fans running to dry things out, but we can't get our hands on any.

So, we'll see. The power is back on. The water in our area needs to be boiled and the house smells like mildew, so we booked ourselves into a Ramada for a couple of nights. It is conveniently located right across the street from a Chuck E. Cheese's and next door to a car wash, and the kids could not be more ecstatic. They fell asleep last night in the same bed after a gigglefest and suddenly, things seemed OK.

Sunday, August 28, 2011

Spaghetti state of emergency...and anyone know how to bail out a basement?

Motto of my life: Things could always be worse. That definitely held true for Hurricane Irene.

We escaped Friday afternoon and headed to a friend's place upstate. Things weren't that bad here, though we were driving around today and there was major flooding and downed power lines (pictures coming soon).

Meanwhile, our street flooded. My neighbor peeked in a window and said there's about a foot of water in our basement. Also, no power. Also, no water. Good times!

But, everyone is safe. No major trees fell, and we have a whole lot of big old trees in our 'hood. And we should be able to get home tomorrow and retrieve Max's refrigerated medication.

Hope any of you who were in the obnoxious Irene's path are doing OK.

Not sure yet how we'll handle Max's spaghetti supply. Our grill has a little burner, that could work. You know I so have my priorities straight to worry about this.

Meanwhile, call in to fire department to see if they can help bail us out.

We've had minor floods before; the last time, Dave stayed up most of the night and with the help of some old towels and a wet vac, he kept most of the water at bay. My hero. But the wet vac's just not going to cut it this time around.

Any of you ever bail out a basement? And just how much fun was it, exactly?

Friday, August 26, 2011

Win a stash of GoGo squeeZ, Max-approved applesauce to go


Along with spaghetti and chocolate ice-cream, applesauce is a staple in our home. Max can't down hard or crunchy foods, and he's slurped up this stuff since he was a baby. He loves the taste, the consistency is right, and it's a helpful way of keeping him hydrated in warm weather. Sometimes, I get him the purple (blueberry) variety.

One recent find for us: GoGo squeeZ, applesauce that comes in a handy pouch in a bunch of flavors; he most likes AppleCinnamon and AppleBanana. Max is able to hold it and down it; yay for independent drinking! Who knows, by next summer he could be holding his own beer! He, he. I love that this stuff is natural and 100-percent fruit, the pouches are re-sealable, and each one is 3/4 serving of fruit. I have been known to borrow one or two here and there—they're totally tasty.

Last weekend, Max and I hit the GoGo SqueeZ Free Play Zone at New York's Summer Streets event. I loved that they were donating 2000 snack pouches to City Harvest, which collects and donates food to the hungry, and showing kids a good time.


Max drank some and did a drawing with a purple crayon, but wasn't up for partaking in any of the crafts or play activities because a band started playing nearby, loudly.

Despite the headphones, Max wanted to GoGo. Still, he'd had some purple-centric fun, not to mention his fill of applesauce.

And now, a GoGo giveaway for three readers. Up for grabs: Four boxes of GoGo squeeZ in various flavors (four pouches per box) and a super-cute Built Gourmet Getaway Lunch Tote. Each set is worth approximately $35. To enter, leave a comment about your child's idea of fun.

Bonus entries:

Like Love That Max on Facebook
Like GoGo squeeZ on Facebook
Follow Love That Max on Twitter
Tweet about this giveaway (one a day). A tweet: Win a cool lunch pouch and 4 boxes of @gogosqueez applesauce to go from @LoveThatMax, ends 9/2

This giveaway is open until Friday, September 2 at 11:59 EST, and is for U.S. residents 18 and older. I will randomly pick the winners at random.org, alert you by email and announce it here. Note, you must leave your email below if it is not visible on your blog.

One last bit of GoGo goodness: Post a photo of your child enjoying a pouch on GoGo Gang; when they hit 100,000 members, they're partnering with Action For Healthy Kids to renovate playspaces in three communities in need.

This giveaway is sponsored by GoGo squeeZ.

UPDATE: The winners are Amy, Emily and Ericka. I hope your kids enjoy!

Thursday, August 25, 2011

Announcing the birth of two new blogs

I think this makes me officially insane, but I am now doing two other blogs besides this one:

To The Max on Parents, a blog about news and views on special needs (and yes, that used to be the name of this blog, I'm into recycling). I just did a post about 9/11, tragedy and Max that's important to me, I hope you'll check it out.

1000 Perplexing Things About Parenthood on Babble. I am up to #36, so I have 964 more to go. It is a good thing I have an abundance of material. Feel free to share any perplexing stuff about parenthood you'd like to see there, or to just confuse me even more.

And no worries, this blog will continue to be every bit as whiny and neurotic as it ever was.

Max wants to run away from home


Max has decided he would like to run away from home. That became clear as of 6:30 this morning, when he popped out of our bed and took off for his room. Dave got up, and I heard some commotion. Groggily, I headed over to see what was going on.

Max has had a gigantic green suitcase sitting in his room since last week, when Dave came home from a business trip and Max insisted on keeping it there. After that, he began talking about sleeping over at his friend C's house (the kid has an actual name, just respecting his privacy). Mind you, he's never even had a playdate with C, who's in his school. Despite repeated requests (even pleas!) from me, C's mom is never able to commit to a date, and I am not sure why. This hasn't stopped Max and his fantasies.

"Eeee! Ahh! Ayleh's! Ouse!" he tells me ("Sleep! At! C's! House!"). Then he counts to ten, because he wants to sleep there for ten nights. He says this phrase approximately every fifteen minutes, just in case I haven't gotten the message but mostly because I think he just loves the thought of it. Max only wants to go to C's house; bringing him here, not so much.

Anyway, I walked into Max's room. Max had emptied his drawers of clothes, and piled them on top of the suitcase, along with his favorite book and a picture of a blue car he had made for C during his last occupational therapy session (because C's favorite color is blue).


"Eeee! Ahh! Ayleh's! Ouse!" he said, gleefully.

He and Dave had worked out a full fantasy day. Dave recounted it to me as Max nodded in agreement: First, Max and C would go bowling. Then they would proceed to Chuck E Cheese's, where Max would down spaghetti with sauce, followed by chocolate ice-cream (three!), and C would have chicken nuggets and ketchup. Then he'd sleep at C's house, for ten nights.

So, Max wants to run away. I am a little bummed that I haven't succeeded in booking a playdate with C, let alone a sleepover, but I will press on. Meanwhile, the pile of clothes shall remain on the suitcase. Drawers are overrated, anyway.

Wednesday, August 24, 2011

9 ways to always have hope for your child with special needs


It's hardest when your child is very young and you're still struggling to accept that he has special needs. So much about the future is unknown, although you've heard every single grim risk of his condition or disease. You wish doctors would just tell you what your child will be like, but they can't say for sure. You want to have hope, and you do, but sometimes worry and despair overpower it and you fear the worst.

As your child progresses you do, too. The worry feels less like a tsunami and more like an undercurrent. You quit looking at your child and wondering what's wrong and you start celebrating what's right. You accept. Sometimes, though, you accept too much and forget that there is still so much potential, and that you should never stop hoping.

Here's how to always have that hope, whatever your child's age:

• Toss the child development books. Unsubscribe to any of the "This is what your baby/child is doing now!" online updates you registered for before you knew your child was going to have special needs. They will only make you compare your child's progress to what is typical, and that will only make you despair. Your child is on his own timeline, and nobody else's. Put that on a Post-it and hang it on your bathroom mirror.

• Look at what your child is doing today. Of course you want him to walk, talk, ride a bike, eat by himself, sing, and do any number of other things. But relishing and appreciating the stuff your child is able to do in the here and now will give you more confidence in his future. Contentment breeds hope; worry breeds more worry.

• If the worry is ever-present, if it makes you cry a lot and keeps you up at night, get help. Find a support group, or see a therapist. Carve out time for taking care of you, because you need to be happy and hopeful—and your child needs to feel that happiness and hope of yours.

• Rethink your idea of "accomplishment." It doesn't need to mean the ultimate goal you have for a child—say, walking. An accomplishment can be your child learning to grasp the handlebars of a walker. And taking a first step in that walker. And taking a step holding your hand. Each and every thing can be A Big Deal, if you make it one. Screech "Wheeeeeeee!" Email friends and family! Alert the press! Your hopes will be buoyed and you will not be sitting around thinking, "Why isn't he walking yet?" Because in your mind, your child is well on his way there.

• You know that old fable about the rabbit and the hare, and how the slow-and-steady hare won the race? Now forget that old fable. THERE IS NO RACE. See above, "Your child is on his own timeline."

• Surround your child with positive doctors and therapists. Regularly ask them to share the great stuff he is doing, ditto for his teachers. Keep a list handy for insta-inspiration.

• When you see friends, family and neighbors you haven't seen in a while, about the progress they see in your child; you'll hear about stuff you probably hadn't even noticed.

• The next time you are freaked that your child isn't progressing, go look at photos of him from a year or two ago, think back to what he was doing at the time, and consider how far he has come. Also: Call up your wisest, most reassuring friend and have lunch or dinner, ideally with wine involved.

• Enjoy your child. The more you do, the quicker the grief will pass—and the more your hopes will be buoyed. Find activities you both like (and remember, not every single thing has to be therapeutic). Take lots of photos. Be silly. Cuddle. Kiss. Try so hard to quit peering into the future, and look at the beautiful child in front of your eyes.


This is one of a series of posts sponsored by CVS Caremark All Kids Can, a more than $25 million commitment to making life better for children with disabilities. "Like" them on Facebook—they deserve it.

Tuesday, August 23, 2011

Win a bag of Barilla pasta—or tickets to a big-deal concert!


If Max were running this blog, it would be called Max Eats Spaghetti Sauce (the name by which he is going these days, which makes me long for the days when he was just Purple Max). I'm not changing the blog's name, but I am happy to offer up free pasta, sauce, peeled tomatoes, a jar of olive oil, an apron and a tote. Yes, it's a bag o' Barilla goodness, worth $55. Please, nobody tell Max I am giving away spaghetti.

Also! If you live in New York, I have two sets of VIP passes to the Andrea Bocelli concert in Central Park, taking place September 15. You get VIP access, VIP seating, and a free fabulous Italian feast. It's the same food concert goers will buying, 25 percent of which goes to the Food Bank of new York.

Oh, and you get to listen to Andrea Bocelli. I love his voice (DUH), but I'm also inspired by the success he's scored as a man who is blind (he lost his sight at age 12, in a soccer accident). Bocelli is the biggest-selling solo artist in the history of classical music. You know his voice; listen to him singing Nessun Dorma ("None shall sleep"), an aria from the opera Turandot.


To enter, leave a comment about whether you want to be entered for the bag or the concert tickets.

Bonus entries:

Follow Love That Max on Twitter
Like Love That Max on Facebook
Mention this giveaway in your blog and share the link
Tweet about this giveaway (one a day). A tweet: Win a tote with Barilla pasta & sauce, or VIP tix to an Andrea Bocelli concert from @LoveThatMax, ends 9/5, http://tinyurl.com/3wuuur5

This giveaway is open until Monday, September 5 at 11:59 EST, and is for U.S. residents 18 and older. I will randomly pick the winners at random.org, alert you by email and announce it here. Note, you must leave your email below if it is not visible on your blog.

Remember to mention which you'd like to win—the Barilla bag OR the Bocelli tickets.

Buona fortuna!

UPDATE: The winner of the Barilla tote is Christine, and Nicole and Allison will be headed to the Andrea Bocelli concert. Enjoy!

Monday, August 22, 2011

Let's talk about miracles, big and small


Before I had Max, miracles to me were fantastical bible events or the stuff of movie magic like It's A Wonderful Life. Miracles never seemed remotely related to reality.

Then I had Max.

I was discussing this the other day at a BabyBjorn event to celebrate the Baby Carrier Miracle, out in October. It felt good on; I miss that baby-close-to-your-heart stage. And it was very comfy, from the way it fit to the softness of the fabric.

Of course, one of the nice perks about the carrier is that it hides post-baby flab from your previous kids. How awesome does my stomach look here? Fake babies are very becoming.

I enjoyed being hired to speak on a panel that included Nicole from Mom Trends and Mike from Playground Dad. Also amazing: The lovely BabyBjorn people are giving a generous donation to Reece's Rainbow Adoption Ministry, a non-profit that helps find homes for orphans with Down Syndrome around the world.

What I especially loved was that when BabyBjorn found my blog, they saw a miracle in Max.

Not everyone does; some people look at Max and see only a child with disabilities, I know. But there are many, many Max miracles. The little ones happen whenever he says a new word or sight reads a new word or runs down our block, doing stuff doctors never thought he would. It's also a little miracle every single time he smiles—I swear, sunshine shoots out of that kid.

And then, there are the big miracles. Like the fact that a doctor told us we could sign a Do Not Resuscitate at Max's birth and now, look at him. And how much progress he's made, and keeps making. And, most memorable of all, the day he took his first steps. That was Miracle Day.

It was Max's third birthday. He'd been zooming around for months on his walker and tentatively taking steps when we held his hand. Dave and I were standing in Max's room. Dave was on one side, holding Max, and I walked a few feet away. I threw open my arms. "Walk to Mommy, Max!" I pleaded. "Walk to me!"

And Dave let go of Max's hand and Max took that wobbly first step toward me. And then he took another. And another. And then he toddled right into my arms, a huge grin on his face, as Dave and I cried big fat tears of happiness. It felt so surreal, after all the praying and therapy and equipment: Max. Walking. On his own.

I never did believe in miracles. But you can bet I do now.

What's been miraculous to you about your child?

Sunday, August 21, 2011

Stuff Worth Knowing About: 8/20 edition


• VSP Vision Care has a national Eye Pledge campaign that provides a free eye exam and glasses to kids in need, through the Boys & Girls Club of America. Visit See Much More, click on "Eye Pledge," take it, select a Boys & Girls Club and share with friends. For every pledge, VSP is donating an exam and new pair of glasses. Nice!

• Retail Me Not is giving away a $5000 shopping spree, plus $5000 to the school of your choice; it ends 8/31.

• Already, I'm wondering how I'm going to top Max's car wash Halloween costume from last year. I'm thinking a plate of spaghetti. Hmm. Meanwhile, I've got some scoop on a cool way to find costumes for free. Swap.com and the nonprofit Green Halloween are teaming up for National Costume Swap Day, on Saturday, October 8. Read more about it here.

• HP is having back-to-school specials on ink—25 percent off. Like HP's Facebook page, go to the "Ink - Welcome" tab and click on "Inkology" to get the deal.

• Del Monte Fresh Produce is running its second annual Teacher Monday: Cash For Classrooms program. It encourages kindergarten through 12th grade teachers to incorporate healthy living messages into class activities. Sixty teachers will each win $750 in cash and $250 in Del Monte fresh fruit coupons for purchasing school supplies and fruits for their kids. Teachers have to register online by November 6; let yours know!

• A new site, Simplee, helps you understand, track and manage medical bills for free (like me, I'll bet you have a few of those. JUST. A. FEW.). You create an account, then enter log-in info for your medical, dental and vision insurance sites. Simplee pulls all claims into a dashboard, and you can get summaries of spending and details on claims. What the site won't do: Get the insurance rep on the phone to explain why they have been holding your claims hostage for months. For that, you need patience, endurance and sometimes, a big mouth.

Thursday, August 18, 2011

On not being afraid to be alone with my child


This week, Dave's been away on a business trip. Sabrina, Max and I miss him, but we've had ourselves a good time both at home and on outings for school clothes and chocolate milkshakes. When the kids were young and Dave wasn't around, though, I'd get nervous about being alone with them. I worried Max would have a seizure, and I was scared of juggling both of them; Max needed a lot of extra TLC.

For years, I'd rarely go out with the kids if Dave wasn't by my side. I felt like such a weenie. Before I had children, I was pretty intrepid; I genuinely liked to do things on my own. I traveled in Europe alone, I'd go to movies by myself—I felt like I could do anything I wanted to. The world, as they say, was my oyster.

That feeling clammed up once I had Max. I was so thrown by what had happened, so insecure about my ability to take care of him. The tremendous responsibility of trying to help a kid with brain damage develop weighed heavily on my head and heart. I'd marvel at the moms I'd see at the mall or in the park strolling around with their kids. They looked like they knew what they were doing. I certainly didn't. I was terrified of mothering my own child.

As it became more apparent that Max's muscles were stiffening, signs of the cerebral palsy, my can-do spirit would stiffen up, too. At times, I felt paralyzed by fear. There were nights when Dave came home from work and I would hand Max to him, go to our room, curl up in a ball on our bed and sob. It wasn't just grief; I felt so helpless.

Max had two seizures, a grand mal when he was almost two, and a petit mal at 5. They were nightmares come to life, but we got the seizures under control with medication. Me, I probably should have gotten anxiety meds back then, but never went that route. The years passed, Max progressed and my strength and spirit rebounded.

These days, I don't think twice about being alone with the kids or taking them out without Dave. Granted, there are places I still won't go with Max alone, like fairs or anywhere crowded, because he wigs out. But I am no longer scared of being his mom.

Have you gone through that, too?

Saturday morning, Max and I will be at the GoGo squeeZ Free Play Zone in New York City's Foley Square. It's open from 7 to 1, part of the Summer Streets event, and there will be activities and crafts. Max is an applesauce fan, and they're sponsoring posts. We'd love to have you join us.

Frogs and dinosaurs and hominids, oh my!


I don't know about you, but I have fond memories of class trips as a kid—to museums, parks, zoos and once, The Metropolitan Opera in New York. Turns out that field trips are a bit of an endangered species these days; they seem to be on the decline, possibly due to economic reasons.

The Kleenex peeps have a campaign to save the field trip, and through The Motherhood invited a bunch of moms and kids to the American Museum of Natural History last week for a sponsored trip. I took Sabrina; Max was in school and besides, I wanted to have a day with her. The morning of, she wailed because she'd be missing camp, but perked up considerably when I mentioned there would be lunch. Kids.

I had to literally drag her out of there, she had such an amazing time. I did, too.


The museum has an awesome Frogs: A Chorus of Colors exhibit through January 8, 2012. I had no idea the little buggers could be so fascinating, but they were. There were 200-plus of them hanging out in recreated natural habitats.

This guy looked like he had something to ask. Perhaps, "Hey! Where's the nearest bar and do they perhaps serve fly-tinis?"

If you're going to eat frogs legs, you'd better not go for these guys as they could be your last meal ever. Yep, the most poisonous creature on the planet isn't a snake or spider—it's a frog. Even touching a dart frog can do you harm. No worries, they're in Central and South America, not your backyard.

Is it just me or does this frog look like Yoda?

Next up, we hit The World's Largest Dinosaurs exhibit, open through January 2. Here's where you can get the scoop on how a super-sized group of dinosaurs lived—the long-necked and long-tailed sauropods, which ranged from 15 to 150 feet long. Average weight: 12 tons.

Here's one, which I believe is called the mother-in-law-eat-o-sauraus.

Sabrina liked this video game, where you got to feed a dinosaur.

This is a typical day's meal for a dinosaur—all salad, all the time. And no dressing.

At the end of the exhibit there was this cool sand pit where kids got to excavate fossils. Jimmy Hoffa was not found.

Afterward, we wandered around the museum for hours. There are a number of hands-on exhibits, along with numerous volunteers around to help or answer questions. Here's Sabrina experimenting with gravity. I loved what I weighed on the moon—only 17 percent of what you weigh on Earth. Relocating to the moon sounds like a much better idea than my current low-carb plan.

This pair fascinated Sabrina. They're hominids, aka great apes who lived millions of years ago and who bore a serious resemblance to humans. Sometimes, I look like that when I wake up.

Of course, we brought home a treat for Max.

Revved to do some field trips now? Kleenex is giving away $5000 to 100 schools in the U.S. to use for field trips. You can sign up your school on their Facebook page through September 14.

Wednesday, August 17, 2011

One spaghetti-tastic day


Let's say you have a son who is obsessed with spaghetti. Ob-sessed. And Barilla finds out. They're doing a Summer of Italy tour, a six-week celebration of Italian food and culture, and would you like to attend some pasta-centric events? They will even pay you a fee for your efforts.

Mamma mia!

Your first mission, because of course you have chosen to accept it: Head off to experience Meal For A Meal, taking place through Thursday in spots around New York. Barilla is handing out 20,000 free pasta dinner kits from food trucks, 5000 a day. That's a lotta pasta. Wait, it gets better: For every Spaghetatta To-Go meal Barilla gives out, the company donates $1 to the Food Bank For New York City. That adds up to 100,000 meals for the needy. And they'll toss in an extra $1 donation for anyone who gets their photo taken for their Facebook page.

You look up "spaghettata" and find out it's Italian for an impromptu, spaghetti-based meal in which friends, family and fun are just as key as the pasta. You've been enjoying spaghettatas all year long and didn't even know it!

You tell your son that you're off to get him some spaghetti. He is a little skeptical of your pasta sensibilities because this week, you tried to make him some purple spaghetti using beet juice. Two problems: Beet juice actually makes spaghetti pink and also, it smells kind of nasty.

Your son stared dubiously at the pink-not-purple spaghetti. Then he caught a whiff and said, "NOOOOOOOOOOOO."

Off to the food truck you go to make amends! When you arrive you see the line and realize that there are a whole lot of spaghetti-loving people out there. Hey! Maybe someday, your son can help run a spaghetti lovers convention (assuming he doesn't switch to lasagna or ziti, that is).

You get your dinner kit and sure enough it contains a box of Barilla spaghetti (score!) along with a jar of Barilla sauce, a container of fresh greens, and packets of Barilla olive oil and vinegar. All this and money goes to the needy. Nice!

You bring your haul home proudly, as if you've been out hunting and caught a box of spaghetti. Your child is asleep by then but you lean down and whisper in his ear, "Max, I got you some more spaghetti!" And he sort of smiles and goes back to dreaming. Probably about spaghetti.

Live in New York? On Wednesday the Barilla food truck will be on East 59th between Lexington and 3rd; on Thursday, it will be on Broadway between 58th Street and Columbus Circle. Oh, and next week, I get to give away a bag of Barilla foods (please don't tell Max I'm giving pasta away!), and two pairs of VIP tickets to a special Summer of Italy concert.

What shape of pasta is your child's favorite?



Photo/DaGoaty

Tuesday, August 16, 2011

A special kind of sibling torture


You might think this is a scene typical of many family bathrooms—a chain of cars stuck to tiles, the sort of design a kid would make during tub time. Actually, it is a form of Sabrina sibling torture.

Max can't raise his arms very high because they're stiff (thank you, cerebral palsy). So usually, he'll line up cars way at the bottom of the wall, where he can reach them. Sabrina likes to dart into the bathroom when he's not around and arrange them up high out of his reach. When Max pulls open the curtain at night for his bath and sees this arrangement, he screeches. It's sort of like the shower scene in Psycho, but not.

There's the standard sibling teasing and tormenting. But then there's the kind directed at a sibling with special needs, the kind that involves Sabrina doing things that target Max's physical challenges. Like when she holds toys up and out of his reach. Or when he wants her to write "Max" on a drawing he made and she writes "Sabrina." Or when she gives him a barely perceptible shove and it totally throws him off balance.

I've had conversations with her in which I've explained she has to be kind to Max because she's his sister and and he needs a little extra help, love and caring.

They don't seem to have penetrated.

Sabrina did attend her very first Sibshops session last month. There were about six other little girls there, and I dropped her off then returned three hours later. They did some crafts and played games geared toward opening up conversations about siblings—like "Popcorn," in which the girls sat in a circle and each wrote two things about themselves and two things about their siblings on slips of paper. They crumpled them up, threw them into the center, and then took turns picking papers and discussing stuff. Sabrina's words about Max (can you guess?): "purple" and "spaghetti."

It's gonna take a lot more Sibshops and maturity for her to chill. I'm a little scared because I basically didn't stop torturing my sister till I went off to college. Hopefully, things will be different between Sabrina and Max because there's a very different sort of dynamic.

Meanwhile, they have the occasional tender moment. We got Max a Cars 2 Look and Find book, where you have to pick out objects in a sea of images. They've been sitting on his bed at night and examining it together, and he's doing just as well as she is spotting things. "Good job, Max!" she says.

At times like those, I feel melt-y. And then I'll hear her shouting out to him, as they fall asleep, "MAX! NO SPAGHETTI FOR YOU EVER AGAIN!"

Monday, August 15, 2011

I did not cry


I randomly got an email from a publicist recently with this photo of a pregnant Selma Blair. I looked at her dress, stared at her bulging belly, wondered how she managed to teeter around on the shoes.

I did not cry.

This is significant because even as of a couple of years ago, I could be brought to tears by a shot of a glowingly happy pregnant celeb. Real-life preggo moms would get me weepy, too. Once, during the year after Max was born, a coworker told me she was pregnant as we stood in a hallway. I burst into tears. Burst. Into. Tears. It was that bad.

It was the grief acting up and melancholy, too, an ache for that time when I was carrying Max and the world held only possibilities. I had no fear anything would go wrong with the birth, or with my child. My biggest problem was deciding on the right green paint for Max's room. I could never have imagined he would have a stroke at birth. I'd think back to Pregnant Me and feel sad for that woman who naively assumed everything would be OK.

I've come a long way. And I know it because this weekend, when I was organizing a closet, I found a folder labeled "Baby" from my pregnancy with Max. I hesitated to look in it—that, I wasn't sure I could handle. But I opened it.

There was a bill for an overpriced quilt set, the "Top of the World" design. Yellow, with little floating hot air balloons. There was a six-page list of things to buy from my friend Wendy, with notes like "Don't buy dress shoes/booties, they fall off." A Certificate of Achievement from the childbirth prep course. Instructions from Cryo-Cell, where we'd chosen to preserve stem cells that we would eventually use for Max. An article from American Baby on the best baby tubs. A note on registering for preschools (yes, I was that hyper-organized). Information on a college savings program. An entire folder full of hope.

I sat there on the floor, the papers in my hand. No flood of emotions washed over me. It was as if I had been on an archaeological dig and found something from many, many years ago, relics of a different life.

I'm not saying that time never gets to me. Doctor visits where I have to discuss Max's history are still hard. The other week, I went to see a new doc and I had to check off "Stroke in family" on a form. When she asked me who had a history of stroke, I felt the grief rise up. "My son," I said in a quivery voice, and the tears dropped.

The fact that the stroke happened to a baby, my baby, I still haven't gotten past. I doubt I ever will. But I no longer grieve for that pregnant woman I was, or for the child I did not have. That's because I am steeped in Max's present...and all the amazing that he is.

Full disclosure: I cried writing this.

Friday, August 12, 2011

What makes your husband hot?

"He cooks on the days I work 12 hr shifts." That's a Facebook friend telling me what makes her husband hot when I posted that Redbook is running its annual America's Hottest Husband contest (deadline is Monday, winner gets a trip to St. Croix and chances are good your husband will take you).

I could totally relate. I mean, I think my husband is sexy inside and out, from his smile to his sense of humor. But I have to say that turn-ons these days include when he fixes up stuff around the house, when he handles Pull-ups changes, and when he does this one super-super-sexy bedroom move: picks up his clothes off the floor. (If you've never checked out Porn For Women by the Cambridge Women's Pornography Cooperative, featuring a man on the cover vacuuming, you should).

I do not think my refined definition of sexy qualifies me as pathetic, though I can't be sure. What I do know is that we've got a lot to juggle in our house and hands-on help is HOT.

OK, what makes your husband hot? Share, then go enter him in that contest!

BLOG UPDATE: I'd changed the settings here so that you needed a registered email to comment. But then my good pal Wendy had trouble commenting. And it's been forever since I've heard from Felicia, one of my favorite commenters of all time, and I suspect that's why. I want this blog to be an open, not closed, space. So I'm switching back to the anyone-can-comment setting.

Thursday, August 11, 2011

5 signs of a good school for kids with special needs

I got an exciting email today from Max's school that got me thinking about the signs of a good school for kids with special needs. I'm no expert, and I don't play one on TV, but I have learned a few things in the years Max has been in the education system. He's only been in schools for kids with special powers; inclusion hasn't been the right thing for him, so far, although I have considered it. Some signs your child is in a good school:

1. The school offers great resources for kids and parents. Max's school does fun programs for kids—an outdoor fair, movie night, a Valentine's dance. They have really helpful stuff for parents, too, and I'm not just talking about spa night. In recent months, there's been a roundtable to discuss pediatric nutrition, a talk by an excellent financial planner, and a presentation by a rep from the Special Olympics. Today, I found out that Max's school is going to be hosting a Specialized Equipment Co-op in September where parents can donate or exchange equipment. HOW AWESOME IS THAT?! In case any of you want to suggest that your school do this, too, here's the very simple process:
• Bring your equipment for exchange or donation to the school
• Exchange or donate with other families who come to the co-op
• For very large or heavy items, bring a photo and a written description to share
• Not able to attend? The Parent Guild will maintain a list of available items
• If your equipment is not acquired by another family, you may leave a photograph and description, but you must take your equipment home on exchange day

2. The school is innovative. Max wouldn't have been on his iPad as soon as he was if his speech therapist at school wasn't familiar with the technology. His school offers yoga and music therapy. It's also partnered with a local hospital to offer aquatic therapy; this is a direct contrast to the opposite-of-progressive school we pulled him out of a few years ago, where I was once told the principal "didn't believe" in aquatic therapy. If I called Max's school tomorrow and told them I'd created a new therapy program that solely involved twirling and eating spaghetti, they'd be all "Sounds promising! Tell us about it!"

3. The principal, administrators and teachers are open to suggestion. A couple of years ago, I suggested to Max's teacher at the time that she send home sheets that described what she was working on in the class, and which supplemental activities parents could do at home. We called it Learning Link, and now teachers around the school use it. (I have a template of the sheet; if any of you want it, leave a comment and I'll zap it to you.)

4. The school is fine with you dropping in, uninvited, at any time. Obviously, this doesn't speak to the quality of the education, but it does indicate a school thinks it does a great job and has nothing to hide.

5. The teachers go above and beyond. Max's physical therapist at school was instrumental in helping us through the serial casting. His speech therapist has taken Max's iPad home to help program it. They email every week, at my request, to tell me what Max has been up to, what progress he's made, and how much he's talked about chocolate ice-cream.

What sort of stuff has made you aware that your child's school is great—or made you aware that a school wasn't great?


Photo/jleighb

Wednesday, August 10, 2011

Be the change you want to see in the world, said Gandhi. Word.


While I was at BlogHer, a few moms told me that after reading my post about tweeting at people who used the word "retard" they'd either quit saying it or had taken to asking other people not to. Loved hearing that.

Katie from Overflowing Brain mentioned something particularly awesome. She used to be a high school teacher, and she'd give kids demerits for saying "retard" and "retarded." Only their parents would sometimes fight her on it, and tell her they weren't words that merited demerits. Katie would point out that the by-laws of her class specified those words weren't allowed. "Thankfully, the school principal and dean supported me," she wrote to me last night when I asked her more about it, "and I'm proud to say that by the end of each school year, I had broken most of my students of the habit. I know a few teachers adopted the same policy in the last year I was there." Get psyched, parents: Katie is studying to be a physical therapist.

It's not always easy to call people on the use of the words, I know. A few weeks ago, a neighbor exclaimed "That's retarded!" as we were walking home from the train, deep in conversation about work stuff. I didn't want to derail our chat, but I couldn't keep quiet. I put my hand on her arm. "I know you didn't mean it, but that word is offensive to me," I said. She apologized, said her mother had always told her not to use it, and that she'd try harder. Then we went right back to talking about work.

My saying something to one person and airing pleas on this blog, Katie giving out demerits to students—small efforts, I know. Neither of us are going to change the world or eliminate the word, but we are changing perceptions among the people in our circles. And to me, that's a lot.

Meanwhile, if you haven't heard about the uproar over the new movie The Change-Up and its use of the word "retard" and "Downsy" (a whole new slam!), check out the post I did on Parents. Be warned, you're gonna get mad.

Tuesday, August 9, 2011

How about a major special needs conference, BlogHer?


"Greed is good" was Gordon Gekko's motto in that movie Wall Street. I'm about to go Gekko on the ladies who run the BlogHer conference...but in a good sort of way.

Last year, we had a BlogHer Birds of a Feather lunch for parents of kids with special needs. I put it together with Julia Roberts of Support for Special Needs, and about two dozen people attended. We both knew there was potential for something bigger and this year Julia got BlogHer to do a Special Needs Mini Conference, because she is amazing that way. Close to eighty of us gathered in a large room for lunch, mingling, listening, sharing, bonding, canoodling (you can read a transcript here).

I'm awed and grateful that Julia pulled this off, and I am convinced she has a double as I'm not quite sure how she managed it. I'm totally thankful to BlogHer for the support. But truth, I am not satisfied. I want more conference—and I'll bet everyone who attended would say the same.

BlogHer now offers several smaller conferences throughout the year: BlogHer Handmade, BlogHer Food, and a business one, BlogHer|bet (Business, Entrepreneur, Technology). This year, before official BlogHer started there was Pathfinder Day, a mentoring sort of program focused on growing your blog.

Surely special needs parenting bloggers could have a dedicated day at BlogHer. Surely we could have our own BlogHer conference. BlogHer Special, perhaps?

Some of you mentioned last week how helpful real-life groups have been for you. Imagine them, but on steroids. BlogHer Special. A conference with sessions, expert speakers, workshops, an expo featuring companies and nonprofits who provide services and equipment. There could be general sessions as well as ones divvied up by type of special needs. Having shrinks on hand would come in handy, but I guess we could make do with cases of wine.

It would be far easier to establish a national conference for special needs bloggers under the umbrella of BlogHer than to create one from scratch. I can think of potential sponsors. I am positive this conference would attract plenty of attendees—both parents of kids with special needs who blog as well as moms and dads who want to start blogging and need inspiration from the rest of us.

So thank you, wonderful ladies of BlogHer, for this year's mini-con. And in the immortal words of Oliver Twist (no relation to Gordon Gekko), "Please, sir, I want some more."


Monday, August 8, 2011

On not dancing naked at BlogHer, and 14 other revelations

Some of you will be sorely disappointed but once again, I failed to dance naked at BlogHer or do anything even mildly wild and crazy (I admittedly have a history of being a BlogBore). Although I did recklessly put in my contact lenses as I sat in my seat during the plane ride!!! And I boldly requested a room change so I could see the San Diego harbor! And I went riding backward down an escalator as I chatted with someone standing on the step above!!! And I broke my low-carb diet!!! Yeah.

I so wish more of you could have made it to BlogHer, especially for the Special Needs Mini Conference (note, everyone there was fully clothed, so clearly I am not the only person who failed to engage in debauchery). We had lunch, chatted amongst ourselves and listened to Rob from Fighting Monsters With Rubber Swords, Shannon des Roches Rosa of The Thinking Person's Guide To Autism and Squidalicious, and Aurelia Cotta from No Matter How Small.

Here I am with Maya from Musings of a Marfan Mom. One thing I've come to realize is that you are going to feel like a Weeble if you stand next to beautiful tall women. Moms I met included Jennifer Bush from Anybody Want A Peanut?, Dana from The Sears Fam, Cheryl from Little Bit Quirky, Angela of Empty Uterus Syndrome and Astacia Carter from Mamikaze, among many others. At just a couple of hours long, the Special Needs Mini Con felt about six hours too short; it should have lasted a whole day (are you listening, BlogHer Powers That Be?).

The conference has gotten ginormous—supposedly, there were 3700 bloggers there. Whew. As usual, I picked up some good nuggets of info and heard about cool stuff:

• At the Voices of the Year keynote, where bloggers read from selected posts (always my favorite part of BlogHer), I listened to Invisible by Diane of Momo Fali. It's about her son, a one-time preemie who has special needs. This, you must read.

• Maybe the best parenting idea ever, from Danielle who helps run Education.com and who plucked it from an article there: Buy a copy of Oh, The Places You'll Go! Each year, have your child's teachers write notes to him or her in it. Show the book to your child someday when he is grown up.

• Walking around conferences helps burn carbs, although how some women do it in four-inch wedges is beyond my powers of comprehension. I wore flats and was still desperately happy to snag a pair of Dr. Scholl's custom fit orthotic inserts. They make your feet very happy—and they are carb-free!

• If you ever need a local special education advocate or attorney, visit the Council of Parents, Attorneys & Advocates (thanks to the wise and wonderful Liz Ditz for that one).

• There's a breakthrough new widget, &you, you can place on your blog that'll list all your fave causes. It's an easy way to keep track of events and make donations (I just put one up on the right).

• I got my hands on a copy of The Digital Mom Handbook, written by my friends Audrey McClelland and Colleen Padilla. I am still hoping Max becomes a supermodel so he can support me in a style I'd like to become accustomed to, but if you have dreams of making a living off blogging, check out this book. It's packed with genuinely helpful info. In it, I speak longingly of naps.

• I'm loving these adorable message and name bracelets you can create, by ShainsWare (they have notebooks, too). Everything's made from recycled material, and the company donates 10 percent of sales to environmental organizations.

• Interesting site: Pinterest, a virtual pinboard. It's like the love child of Tumblr and Flickr.

• If you've never signed up for Upromise, a free service that lets you sock away money for your kid's college education just by shopping, consider it. We're saving for both Max and Sabrina. I'm not just dreaming Max will go to college; I am determined he will. He can put his supermodel career on hold for awhile.


• Leapfrog is coming out with the LeapPad tablet on Aug 15. It has 100+ activities and games and a built-in camera, and if I get one for the kids it would make me their favorite mom EVER. Oh, and if you are a child who drops it OR you are an adult fondling one at a demo and you happen to drop it (eep), it will not break!

• Something I learned at the Life Well Lived day during an aromatherapy session in which everyone inhaled: Dab frankincense on your wrists, or another essential oil, so you get an invigorating whiff throughout the day.

• One night, a bunch o' bloggers got a sneak preview of Pan Am, an ABC TV series set in the sixties about the escapades of flight attendants. It debuts September 25 and stars Christina Ricci, who I love. The show seemed amusing enough, and made me wistful for the days when airplane travel was glam and you didn't have to worry about security. Or snacks with carbs.

• Speaking of which: If you are going to break your no-carb food plan (more about my Eat Well or Die regimen coming soon!), you'd better do it on something good. I'd say that a Dove Bar counts. Especially if you get to down one as you are sailing around the San Diego Harbor. Note to self: Find yacht for sale on eBay and/or check if Retail Me Not has a coupon for one.


• At a breakfast thrown by The Blogging Angels (their podcasts are excellent...and carb-free!), we got scoop on making your blog more fab. One tip: Make it easy for people to share posts. Voila! My new thingie below (the one that says "Share the love!"), also known as a Sexy Bookmark. And I got me one at the BlogHer Geek Bar, courtesy of Sarah from Technology For Moms who has vast amounts of patience. One of these days, I will quit being so html-phobic. Can't someone create some html that will let me eat carbs?

I have 10 coupons for a free container or carton of Dove Ice Cream, and I'd be glad to help you break your diets too! If you want one, say the word below and I'll email you for your address. Or just share what wild and crazy thing you did or did not do this weekend.


Note: I received some of the stuff mentioned above gratis, but the opinions expressed and calories are solely my own.