Let's make it a real Memorial Day, k?

I'm so looking forward to enjoying family time today, the first holiday in what feels like forever. I've been reading up on Memorial Day because I want to talk to the kids about what it means. It was started to honor Union soldiers of the Civil War, and expanded to include others after WWI. It became a three-day-weekend holiday in 1971, which some people felt undermined the meaning of the day. That's easy to see; the commemorative aspect gets totally lost amidst all the beach jaunts and barbecues, doesn't it?

I'll bet if Jay Leno did one of his Jaywalking skits and asked people on the street what the holiday memorializes, a bunch of them would have no clue. (For the record, I am a Dave Letterman devotee; Jaywalking is pretty much the only Jay Leno thing I can tolerate.)

The kids may be a little young to understand the significance of this day, but in between scooter rides, hot dogs and dips in the ocean, I'm going to give it a shot.

Max's continued identity crisis

So, Max is OK, no concussion. He slept a little restlessly (I sure didn't sleep too well) and this morning, his eyes seemed like they were a bit dilated, but he was his usual cheerful self and I decided I was still overreacting. So I sent him off to school, called the nurse there and asked her to take a look at him. She says he's OK.

In a word, PHEW. Felicia and Jerri, thank you ever so much for that lovely suggestion to go comfort myself with ice-cream. As if I needed encouragement. :)

This seems like a fine time to update you about Max's latest identity change. The obsession with purple that started sometime this fall is still going, in full purple force. Last week Ally from Ally in Wonderland, an absolutely lovely and wonderful special-ed teacher (I have often wished she was Max's teacher!) sent us this framed Purple Profile.


It's from her childhood—she loved the color purple back then. As she e-mailed me, "It's sitting in a box now, totally wasted, it needs to be with someone who'll appreciate it." She is so sweet that she was even concerned she couldn't find purple bubble wrap to send it in, so she layered pink and blue for a purple-ish shade.

Max giggled with glee when we opened the box. Then he lay down on my bed, held the frame (with TWO hands!!!) and gazed at in awe. I read the words to him:

You are a purple person if...

• You are imaginative, sensitive, artistic and sophisticated.
• You are alert, demanding, foresighted, confident, resourceful, spontaneous and highly independent.
• You take chances and believe that you mst do so to make the most of what life has to offer.
• Purple is a unique color, and it is truly a unique individual who holds it dear.

And now, for the big announcement: I am here to inform you that Max is no longer Purple Max. It's a good thing we didn't put through the paperwork to legally change his name, because he has decided to amend it. I'm surprised Ally's profile did not mention how fickle purple people can be.

As of a few weeks ago, after we took him to a car wash, he decided he was Purple Car Wash Max. And then, as of a couple of weeks ago, he fell in love with spaghetti. At school they've been teaching kids about other countries and Max took a liking to Italy and, in particular, its pasta.

And so now, he is Purple Car Wash Spaghetti Max. When I lean in to kiss him good night and say "I love you, Max" he shakes his head and I have to say, "I love you Purple Car Wash Spaghetti Max." The only thing that soothes him when he is upset is to tell him that I will take him to the car wash, soon, and we will eat spaghetti there. Sounds totally do-able.

I am not sure Max's new name will serve him well in his professional life down the road ("Introducing our CEO, Purple Car Wash Spaghetti Max!") but, hey, it works for him now.

Wishing you and your kids a lovely long weekend filled with purple, car washes, spaghetti and whatever makes everyone happy. Reminder (shameless self promotion alert), you can vote daily for that Nickelodeon Parents Connect award I'm up for, just click the button at the top of the page on the right.

I get a little irrational about head injuries

Tonight, I was hanging in bed with Max and Sabrina, reading books. It was twilight and rainy outside, and it was so nice to cuddle up with them and read the Olivia Forms A Band book Sabrina had gotten at the library. Then Max decided he wanted to look out the window. Sabrina ran to the other side of the bed; she wanted to help him down. And suddenly, before I could stop her, she grabbed his legs and pulled him off the bed. Max body-slammed onto the floor. It all happened so fast.

I shrieked and ran over to Max, who was sobbing. Sabrina started sobbing, too, because I scared the heck out of her.

Max cried for a good five minutes. Once he stopped, I peered into his eyes to see if his pupils were enlarged, a sign of a concussion. They seemed normal. I asked him to point to where it hurt, and when he gestured at his head I felt a little sick. Sabrina kept sobbing, and I also felt awful about having freaked her out. As I held Max I explained that I shouted because I got scared that Max was hurt, and that I knew it wasn't her fault and that Max was OK, and she calmed down. "Max, you're OK, you're OK," I crooned as I rocked him back and forth, fervently hoping that he really was.

After I put them to bed, I looked up The Mayo Clinic's list of concussion symptoms. I felt comforted seeing them, even though I know them well. I have called the pediatrician several times over the years when Max has fallen and hit his head. Ironically, he's tended to fall more often than typical kids because of his brain injury. Since his balance is pretty decent these days it's not as much of an issue but when he was learning to walk, he'd conk his head a lot. At one point, we had him wearing a helmet.

I got a little distracted because the Mayo Clinic site lists slurred speech as a symptom and I was like, um, that is what Max sounds like all the time. But then I scrolled down and they had the specific symptoms for head injury in children: listlessness, irritability, change in eating or sleeping patterns, loss of balance. So far, Max is OK. He went to sleep with his usual cheerful demeanor, although I keep checking on him.

I am still feeling shaky. Dave is away on business, so it's me and the kids. I just downed ten mini Toblerone chocolates in a row, straight-up stress eating.

I am not a person who typically freaks out during crises, and this I know because I have had to deal with two different seizures Max had, the first a gigantic grand mal when he was one-and-a-half that lasted even after he got to the hospital and the medicine they gave wasn't strong enough, the second a smaller one last spring. Both times I immediately dialed 911, told the dispatcher what was going on and Max's history, talked with the police when they got to the house a few minutes later. I handled it OK, though it was awful.

But tonight, the sight of my child potentially suffering a head injury unhinged me. Completely. It was as if, in a matter of seconds, the repressed fears I have about Max came out of their hiding spots in my head and amassed themselves in my chest into a ball of terror. My concern about a head injury isn't irrational—but the intense reaction it triggers is. I have a feeling this isn't uncommon among parents who have been through an NICU trauma.

I am off to check on Max again, poor little guy.

When Silly Bandz aren't so silly

Mostly when I'm around Max, I think about the stuff he's able to do. Like the other day, he said the word "spaghetti" for the first time (it sounded like "suh-eh-hee" but I knew what he meant), and my heart did this little cartwheel. Guess what he's had for dinner the past five nights?

Every so often, though, I get tripped up by something Max is not able to do. Last night my friend Stephanie, who writes the blog Formerly Hot (for the record, she is still hot), posted this photo on Facebook of a project her girls had made.


Suddenly, there I was thinking about Silly Bandz, and the fact that Max couldn't use them. They're the hottest thing in Sabrina's preschool class, and she has a few packets of them. I've been amused because it's the first collectible she's into. The first thing I ever collected as a kid, dork that I am, was stationery. Anyway, I hadn't really thought about Max and Silly Bandz until I saw Steph's photo, and realized he wouldn't be able to use them.

Max has major dexterity issues. Because he has no pincer grasp (the ability to hold an object between your thumb and pointer finger) playing with something as tiny and squiggly as Silly Bandz would be really tricky for him, if not downright frustrating.

I stared at my computer screen and pondered that. My child can't play with Silly Bandz. I mean, yes, Max has plenty of other stuff to enjoy— balls, toy trucks, Shrek figures, purple whatever—but these animal-shape rubberbands are not a possibility. And just for a moment, it seemed so quintessentially wrong that a child would not be able to enjoy a simple thing like Silly Bandz.

Sometimes, those little special-needs shocks to the system just sneak up on you.

Vote for me, or just send chocolate

In case you hadn't noticed, there is a rather large (some might say obnoxiously large) new button to the right. I'm a contender for Sexiest Mom Alive Best Parenting Blog over at Nickelodeon Parents Connect. Out of 50 nominees, I'm the only one who blogs about a kid with special needs, which is disappointing. I mean, I'm grateful and honored, but I wish there were better representation of the special needs community, there are so many great blogs out there.

I love this blog, and I take pride in it. I don't do it for money (THAT'S for sure) or fame, although several people have lately referred to me as Purple Max's mom. I do it because I want to inspire and inform, and in return be inspired and informed by you. I do it because it's cathartic. Most of all, I do it because Max rocks, and I want the world to know.

The nominations are open till June 17, and you can vote here or by clicking on the button, then just scroll down to Max's happy face. The person with the most votes makes it to the finals. You have to register to cast your vote, and you can vote daily (I know, like you have nothing better to do).

Some very popular blogs are in the running, so I'll probably get squashed, but thanks for your support! If you don't vote, no worries, I will still love you though my mom might be mad at you.


Photo/Voice of Eye

What's on your Lucky List?

I was really happy to hear, on yesterday's post, that a bunch of you have parents who pitch in with childcare. You're lucky. Dave and I happened to be talking about luck last night. The kids have been hanging outside a lot lately, and Dave mentioned how lucky we are that we live on a dead end street, where Max and Sabrina can play out of cars' way.

It got me thinking about luck. We are most definitely not lucky that we have a child who had a stroke at birth. It happens to 1 in 4000 kids. Max was that 1 in 4000. And yet, in other ways, we are very lucky about Max.

• We are lucky that Max is doing as well as he is, despite all the grim things doctors told us when he was born.
• We are lucky that Max has determination in him. Fierce determination to find ways to do things that are a struggle for him, anything from holding a spoon to riding a bike.
• We are lucky that we are able to afford therapies for him and get the insurance company to pay for others (and we are lucky I have a big mouth for battling insurance companies).
• We are lucky there is a good school in our area to send Max to.
• We are lucky that there are good therapists and doctors in our area, too.
• We are lucky that Max has a feisty little sister who can inspire him to do more (when she is not tormenting him).
• We are lucky Max is as cute as he is, because I think it makes people want to go the extra mile for him.

That felt really good to write. Think about it: It's not essentially lucky that any of us had kids with disabilities, is it? And yet, really, there is much luck surrounding them.

What's on your Lucky List about your child?

What challenges do you have finding care for your child?

This weekend, I went to a retreat sponsored by Care.com, a site that connects people seeking help for their kids, parents and pets with caregivers. I just signed on to be a paid ambassador, and a group of us met up to discuss the company. At a hotel/spa, no less! I met some absolutely amazing women, including Sheila Marcelo, founder and CEO of Care.com, Cooper from The Motherhood, Amy from Mommy Tracked, Christine from Boston Mamas, Lindsay from Rock And Roll Mama, and Morra from Women Online. I'd already met Jennifer James, of Mom Bloggers Club fame, at Blissdom and adored her. Please take a sec to register your blog at her site if you haven't yet, it's a great community and she'd love to keep it growing.

The retreat was filled with good conversation and information, good food, good wine, good naps (two!!!), even a very good facial. My pores are extremely happy right now.


We even did this cool activity where we all sat in a circle and played drums with a cute guy someone called a "nugget." (No worries, honey, you are my one and only nugget, though it would be ever so nice if you could cut your toenails.)

We talked a lot about moms and their needs, though we didn't delve into kids with special needs because there was so much to discuss. But clearly, when you have a kid with disabilities, finding care presents some unique challenges.

We are beyond fortunate that Linnette, the nanny we hired before Max was born, is still with us. Last year she won the Care Hero contest I entered her in, and that's how Care.com knows me. Other than lucking out with Linnette, finding babysitters hasn't been so easy. I miss having my mom and my sister, my best sitters. When Max was a baby, they helped me stay sane. But my sister had to go off and have a baby (so thoughtless of her) and my mom's getting on in years (similarly thoughtless behavior). When Max was little, we also got respite care through a program with The Arc.

I'd never feel comfortable leaving Max in the hands of one of the neighborhood teens. We need someone really experienced. This person has to be comfortable feeding Max and making sure he doesn't choke on anything. She also needs to give Max seizure medication. Most important, I need to feel confident that if the worst happened—Max had a seizure—she'd know what to do.

Common sense is key, too. The other day, I walked in and found Max roaming around by himself; the babysitter had gone down to the basement to get something. She'd left that door open, which is dangerous because Max is in this Superman stage where he thinks he is capable of doing anything. That's awesome, yes, but he hasn't got the going downstairs thing down pat.

I know that some of your situations are even more complicated. What concerns and challenges do you have about finding help for your child? Who do you trust with him or her?


Photo/Just My Perspective

Glad to be a working mom

Before I had kids, I was a bookworm. I read regularly and voraciously. These days, I am a book slug. It takes me approximately two months to get through a book, and I am typically in the middle of several at once. This is especially pathetic when you consider that one of the books I've been trying to finish is about juggling family life, work life and having a life. It's a funny, charming, relatable read with a title that made me smile the first time I saw it, Just Let Me Lie Down: Necessary Terms For The Half-Insane Working Mom. It's written by a former coworker, Kristin van Ogtrop, who's editor of Real Simple magazine.


The book is filled with definitions, mini essays and musings. A few of my favorites:

Boredom fantasy: When you think lovingly back to the time when you were fifteen and had nothing to do but lie around the house, obsessing over the fact that you would never have long, beautiful fingernails, hair like Claire Fleming, or a boyfriend.

Hamster wheeling: The depressing state of being when you feel like you're running around and around and around but not actually getting anyplace or accomplishing anything.

Panic room: Any place where you are held hostage by a meeting that is going on longer than necessary and is conducted by people who apparently have nothing else to do for the rest of the day.

Family-friendly living: The happy-sad reality that your family is actually much, much better off because you work. And we're not just talking about the money.

I kept thinking "YES!" as I read, particularly when I got to that last point. Over the years, I've met moms of kids with developmental delays and disabilities who have chosen to quit working and stay at home to care for their children. I am not that mom. After Max was born and I went through three and a half months of hell during my maternity leave, I wanted to return to work. Obsessing about Max's future consumed me and made me anxious all the time. I cried a lot. I moped a lot. I felt devoid of energy and enthusiasm and the joy of life. None of which was good for Max, me, Dave, anyone.

So I chose to return to my job as a magazine editor. We hired a wonderful nanny, who's been with us to this day. She sat through most of weekday therapies, and then she'd fill me in when I got home. My boss at the time generously let me work at home on Fridays and I'd take Max to aquatic therapy in the morning, and PT in the afternoon. Like any other working mom, I found ways to be there for school events and meetings.

Did I feel any guilt—guilt that I was denying/avoiding/escaping the realities of my developmentally-delayed child? Well, yeah. Vast, dripping, oozing amounts of guilt. I had fled the horrors of what happened to my child for the comforts of an office tower, a place where I didn't have to talk about delays, spasticity and seizures. A place where I could have some control, unlike the seemingly out-of-control situation at home. Some days, as I sat there editing pieces on hairstyles or relationships and stared at photos of Max, I'd agonize over whether I'd made the right choice. But I kept on working. And I still am.

Max has never stopped making progress. He's coming along, at his own pace. I do not think he would be doing any better if I would have become an at-home mom. Stay calm, this is NOT to disparage moms who stay at home, or who quit work to be with their kids because it's financially possible for them. More power to you. I'm saying that working has been the right choice for me, and for my family. It has kept me sane. Which makes me a better mother.

Do you work? Did you choose to stay home with your child?

photo/istock

Dealing with therapy guilt

Rebecca's comment on yesterday's post about a "Therapy Mom" bumper sticker still makes me smile. Sometimes, I feel like such an expert in therapy techniques I could be a therapist myself. One mom who used to live near us got so fed up with the lack of quality speech therapists in our area, she went to school and trained to be one. I don't know why, but good speech therapists are always the hardest kind to find.

Several of you talked about feeling guilty for not getting enough therapy and not doing enough. I've been there, felt that. But here's the thing: therapy is great, yet there's so much beneficial stuff you can do for your kids throughout the day. And it doesn't have to involve doing therapeutic exercises or moves or anything therapists "told" you to do. I loved what Cathy said: "I feel like every thing I do for my little guy is therapy. Even playing games every night to work on counting, letters, concepts, etc." And Tiffany: "We sure do a lot of 'incorporating it into every day life so it doesn't seem like therapy' and a lot of 'family life fun' therapy!

It's so true. Playfully bicycling a child's legs as you change his diaper, tossing pennies into the fountain at the mall, just sitting on the porch and singing with a kid—it's all beneficial to their bodies and brains. Worrying about whether a child is getting enough formal therapy only makes you anxiety-ridden, which is not good for you or your child. Which brings me to the excellent question Janet asked: "Where do you draw the line between being a therapy-mom and letting your child just be a kid?"

When kids are this young, they don't think of therapy as "therapy." Besides, a good therapist makes sessions fun and engaging. It shouldn't seem like a chore. When Max first started going to school, I was talking with his speech therapist and she told me that the way she would get him to focus was to say, "Max, we have to work now, and then we can play after." I asked her to quit saying that, because I didn't ever want Max to think of therapy as "work." It's like when you tell kids "Eat your vegetables and you can have dessert," they learn to think of veggies as the devil and dessert as the reward.

Max has a lifetime of therapy ahead of him. One of these years, he may realize it's therapy but for now, it's still fun. And while I get him a fair amount of it—especially speech—I also take heart in knowing that playing with him and goofing around and exposing him to new places and generally loving him up are all helping him come along.

P.S. If you haven't entered the giveaway to win one of Melanie's awesome crowns/capes, go to it! She's an awesome special-needs mama.

Photo of Praying Hands sculpture at Oral Roberts University, Tulsa, Oklahoma/mulmatsherm

Therapies for kids with special needs (up the wazoo)

I recently read a thought-provoking piece on Babble by a wonderful writer I know, Lynn Harris, about whether too many kids are getting occupational therapy. Among other factors Lynn addressed how some moms, eager to give their kids a competitive edge and get them into the "right" kind of school, haul them to OT if they show the slightest delay. I don't know Those Kinds of Moms. If anything, I've encountered ones who were hesitant to get their typical kids OT or speech because to them, it carried some sort of stigma.

Lynn's piece that got me thinking about what life would be like if Max needed only one kind of therapy. It's really hard to imagine; he's been in various forms of therapy since he was a month old. In his early years Max got aquatic therapy and hippotherapy (horseback riding), along with mainstream stuff. Toys helped, too. There's Max above at age two with one that helped him pull to stand and encouraged him to grasp balls (it's the Fisher-Price Baby Playzone: Pull Up Ball Blast).

Here's our current list of therapies:

* Occupational therapy: Twice a week at school, twice a week at home (from the therapist who's seen Max since he was two months old)
* Physical therapy: Twice a week at school
* Speech therapy: Three times a week at school, plus twice during weekdays with one speech therapist and once on Saturday with another
* Music therapy: Once a week
* Giggles therapy: All the time, as often as we can. This is a cutting-edge therapy developed by me and Dave that involves making silly sounds, doing crazy dances, singing "MAX IS PURPLE-PURPLE-PURPLE-PURPLE" at the top of our lungs or bascially doing anything we can to make Max laugh. It may just be the most feel-good therapy ever invented. Soon to be patented!


Oh, and wait, I almost forgot about the world-famous, highly controversial toilet therapy. Max was mesmerized by the one on our first floor. It totally encouraged him to pull to stand.

So, what does your child's therapy list look like these days?

Kid goodies giveaway: Win a supercool crown or cape for your child

My blog pal Melanie, mom to Daniel, has been hand-making absolutely gorgeous felt crowns and capes for kids. Daniel, who totally reminds me of Max, also has cerebral palsy, as well as infantile spasms and a rare brain malformation called bilateral perisylvian polymicrogyria. Melanie writes the blog Better Than Normal, and she has a strong grasp on reality and good sense of humor. She's been making stuff to pay for Daniel's alternative therapies, ones not covered by insurance. ALL proceeds from her handiwork go toward helping her son.

Melanie's Etsy shop is filled with adorable crowns. How can a kid not love them? She also makes ones by request, in pretty much any design you can think of, and she offers party packs for birthday celebrations (or any kind of celebration).

These are some of my faves, aside from the cape and crown Melanie recently made for SuperPurpleMax and Sabrina:







Melanie has offered to make three custom crowns for three random winners. To enter, please leave a comment telling us what kind of crown you think your child would like.

BONUS entries: After you leave your main comment, leave a separate one for each of the following that you have done:
• Head on over to Melanie's blog and say hi to her and Daniel.
• Follow Melanie's blog, while you're there.
• Tweet about this giveaway and leave a comment with your tweet time stamp (translation for Twitter newbies: click on the time below the tweet, which shows you the URL). You can use this tweet: Win a beautiful custom-made kid's crown or cape from @LoveThatMax, ends 5/25, http://tinyurl.com/26tmqkv, #giveaway

This giveaway is open until Tuesday, May 25, 2010, 11:59 p.m. EST, and is for U.S. and Canadian residents. I'll pick the three winners via randomizer.org, announce the winners the next day, and alert you by e-mail.

Please let friends know about this giveaway, and Melanie's handiwork. She's a talent, and did I mention all proceeds go toward helping her son?

Update: The winners are Jessie, Christina and smgoodie. Congrats!

Date night

Saturday night. Dave and I are headed to a little Cuban restaurant we love. We pass by a packed outdoor cafe. "We ate there once, didn't we?" I ask.

"Yeah," says Dave. "It was right before Max was born. I hate that place."

"Why?"

"It brings back bad memories."

Oh.

"Honey, that was a beautiful time before Max was born," I tell him.

"Yes, but then we ended up in hell," Dave says. "It was catastrophic."

Dave hardly ever talks about the period when Max was born. So when I hear him say things like this, they take me by surprise. And they pain me. Dave is the most cheerful, easygoing guy I've ever met, and it still hurts to think back to how shattered he was during Max's two weeks in the NICU. I wasn't sure I'd ever see happy-go-lucky Dave again.

We drive in silence for a minute. Then Dave says,

"If I had known Max would turn out the way he did, I wouldn't have been so upset back then."

And we're quiet again. And we're headed to the little Cuban restaurant. And I know we're both thinking about how lucky we are.


Photo/M Bob

The case of the kidnapped purple jacket: a confession

Dear Suzette,

We were so pleased to have the kids over at our house last weekend. Max was particularly pleased because Teilo was wearing a purple sweatshirt jacket. He was even more pleased when Teilo accidentally left it at our house. I had every plan to walk it over, except I didn't get a chance and left it sitting on the bench in our front hall.

Monday morning: Max is on his way out the door to the school bus when he spots the purple jacket. He wants it. He wants it baaaaaaad. He is still in the throes of his purple obsession. I am weak. I put the jacket on him and off he goes. You should know that I am not typically in the habit of aiding and abetting criminals, just in case you're wondering what kind of a family this is. We are typically an honest, decent family, albeit one that was lacking in purple jackets until Teilo came along. Teilo rocks.

Tuesday afternoon: I am hanging on the porch with the kids. Max has Teilo's purple jacket on again. I am thinking evil thoughts along the lines of, I'll bet Teilo has lots of jackets. Nobody's going to miss this one. Suddenly, you drive by. I gaze at you guiltily, and slink down on the our porch swing. You do not glance our way. I am relieved. I like you and all, but Max is getting a little attached to this purple jacket.

Wednesday, Thursday, Friday, Saturday: Max wears the purple jacket. When I ask him whose jacket it is, he says, "Max!" I shake my head. "No, Max, it's Teilo's jacket" I tell him. "MAX!" he says, triumphantly.

Tomorrow is going to be a week since Teilo left his jacket here. I fear Max may have a life of crime lying ahead of him if we do return the jacket to its rightful owner. We will make every attempt to walk the purple jacket (washed!) back to you tomorrow. Or on Monday. Or maybe next year.

I hope you'll be OK if Max wears it on the way to your house?

Your neighbor,

Ellen

This is what passes for graffiti where I live

Have a love-filled weekend, everyone.

I amazed Tyler Florence with my culinary skills

OK, so I didn't really impress him. But I was invited to a cooking event with him, Wish-Bone's Salad Night Live. As some of you might recall, I am not big on cooking. But I am game to watch chefs in action. Especially when they are hipster chef Tyler Florence.

I learned several things, including:

• If you buy fresh herbs, cut off the bottoms (like you do with flowers) and dunk 'em in a cup of water; they'll stay for a week, assuming your kids do not use them for an arts and crafts project.

• To get those cool grill marks on stuff you're barbecuing, douse a rag with olive oil and swipe the heated grill. Use tongs if you're too chicken to touch a hot grill with a rag. Go on, impress your friends and family.

• To clean lettuce you've bought at the farmers' market, soak the leaves in cold water in your sink; when you lift them up, the dirt will be left lying in a layer on the bottom of the sink. Leave the gunk there and surely your husband will clean it up. HA HA HA HA HA HA

• Get knives sharpened on a stone, not a wheel. Or you can just get them as a wedding gift and never sharpen them again, like we did. I think Sabrina's child scissors are sharper than our kitchen knives.

• Tyler has, at some point, had a knife accident involving every single one of his fingers (I asked).

Tyler whipped up three kinds of salads. As I stood there, I realized that there are days when I don't down a single vegetable, and that I really need someone like Tyler to come to my house and make me fancy salads. But I probably couldn't count on him, seeing as how my knives are so dull.


My favorite salad: the Arugula, Roasted Cherry Tomatoes & Bocconcini Salad. Yum. It was totally heartening to hear that Wish-Bone and other salad dressings with natural oils (think soybean, canola and olive oil) help your body better absorb vitamins from the salad.

As I was leaving the event, supersweet Frani said she could offer up as a giveaway one of the gift bags we all got. It has Tyler Florence's book Dinner At My Place, salad tongs, a salad carrier, and two bottles of Wish-Bone salad dressing, ARV $45.

Just leave a comment below about the easiest dish you know how to make, and I'll choose a winner by this Monday, the 17th. Be sure to leave your email if it's not visible on your blog or I will be forced to chase after you with a dull knife.

Update: The winner is Jen. ENJOY!!!


Photo/Patrick Butler

The funniest joke I think I've ever heard

Max has a really healthy sense of humor, especially when it comes to anything related to poop. Some of you may recall the video of Max pressing the fart button his speech teacher installed on his communication device. You might also recall that one of Max's favorite sights at Disney World was a lion taking a dump, after which Dave regularly chanted "Lions make big doodies!"

We are such a classy family.

Last night, Max was lying in bed as I read his new purple book to him, Jungle In My Bedroom, and we got to a page that showed a lion. Max pointed to the lion, sat upright and gestured toward his butt. Then he cracked up.

At first, I didn't get it. Then he said some semblance of, "Lion made big doodie." And I started laughing hysterically. Sabrina came running into the room to see what all the fuss was about. She wasn't that amused, but then again she has a strange sense of humor involving knock-knock jokes that don't make any sense.

Yeah, you had to be there. But let me say, I am awed. I just had Max's annual IEP this week, and I told the teacher I wanted to work on developing his higher level of intelligence—things like being able to understand abstract concepts, such as time; being able to make connections between ideas; being able to think beyond people and objects that are right in front of him.

Max's joke showed me that he has an excellent memory. And that he can definitely put distinct thoughts together. And that, like any little boy, he thinks doodie is funny.

My little comedian. Hey, maybe Max needs a Facebook campaign to star on Saturday Night Live? Move over, Betty White!

Now, share: What makes your kid crack up?

My child is not his age, and that is OK

"Can you help? I need a purple book, my son's obsessed with purple." That's me talking to the nice lady at Barnes & Noble over the weekend. I'd gone there to return some SpongeBob SquarePants books Dave had bought Sabrina, because I think SpongeBob is taking over her brain. Instead, I got her a book in the Charlie and Lola series, I Will Not Ever Eat A Tomato (these books are adorable!), and then I wanted a good, purple book for Max, as I am his purple enabler.

"How about Harold and The Purple Crayon?" she says.

"Got it!"

"Well, I know this is for girls, but what about Purplelicious?"

"Got it!"

"Lily and The Plastic Purple Purse?"

"Got it!"

I didn't even bother to mention that we had a copy of I Love You The Purplest, signed by the author herself.

I spot a book with a purple cover in a display case, Jungle In My Bedroom. You push a button to make a light pop up on every page. It's adorable, and it's got lots of PURPLE, but it says "For ages 3 and up." Suddenly, I'm a little stuck. Max is 7. Chronologically, he's too old for this book. Developmentally, he is not.

ARGH. I sometimes feel stumped when I'm confronted with age-appropriate numbers such as this. Actually, they used to freak me out. I spent most of Max's early years obsessed with whether or not he was doing things that were "right" for his age, and it brought me nothing but anxiety and heartache. I long ago tossed the child-rearing books and quit subscribing to the "Your Child Now" updates, yet the "For ages ___ and up" lines on books and games still give me pause. I wish there were a more inclusive way to describe a book's relevancy to a child, but these are the standards. And I can choose to pay attention, or I can ignore them.

It doesn't take me long to decide: Reading anything to Max that will engage him is age-appropriate.

I get the book. Max liked it. He laughed. He listened to every word.

All right, that's it: To hell with the numbers.

House party (thank you, iCarly)

The best Mother's Day gift: watching the kids dance. Sabrina's moves in this video kill me. And hearing Max sing is pretty much the most incredible sound in the whole, wide world. Unless, of course, one day he stands up and recites the Gettysburg Address, or something like that.

Happy Mother's Day 2010!

Got flowers from Dave.


Got flowers from Sabrina....


...and a picture frame.


Got purple stuff from Max.

And I got to sleep late! Yipppppeeeee!!!

How are you celebrating?

A little Saturday inspiration for ya

"My mom always told me there will always be people who don't think you can do it. Don't listen to them." That's Toby Williams talking, a man with cerebral palsy who got his master's degree in communication, media and theater after 13 years at Northeastern Illinois University.

It really gives you hope, doesn't it? You can read the story here. Thanks to reader Cindy for sharing it with me.


Photo: Brian Jackson/Sun-Times

Mother's Day giveaway: Win a $340 Lancome makeup set

You know how I feel: Nobody deserves pampering more than moms. I mean, I think there ought to be a law that we should get breakfast in bed Sundays year-round, but till then, we can revel in Mother's Day...and giveaways that are Mother's Day worthy. Thanks to the generosity of the lovely ladies at Lancôme, here's an amazing one: You could win this $340 gift box of makeup. And I have two up for grabs.

Each of the two boxes contains: • Ombre Absolue Duo eyeshadow in Splendid Sapphire • Ombre Absolue Duo eyeshadow in La Dolce Violetta • Juicy Tubes Smoothie in Spring Fling • Juicy Tubes Jelly in Bolole • Color Fever Shine in Fashion Crave Framboise • Color Fever Shine in Pink in the Limo • Tropiques Minérale bronzer • Ôscillation Vibrating Powermascara • Le Crayon Khol in Black Coffee • Le Crayon Khol in Black Lapis • Flash Bronzer Anti-Age Face Lotion • BiFacil Eye Makeup Remover.

To enter, just leave a comment about your three favorite kinds of makeup. Mine: black mascara, pink lipstick, sheer face powder.

BONUS entries: After you leave your main comment, leave a separate one for each of the following that you have done:
• Follow LoveThatMax on Twitter.
• Tweet about this giveaway and leave a comment with your tweet time stamp (translation for Twitter newbies: click on the time below the tweet, which shows you the URL). You can use this tweet: Win a $340 Lancome makeup set from @LoveThatMax, ends 5/15, http://tinyurl.com/29vjghz
• Subscribe to the To The Max feed; you can do that here, or another way, and leave a comment saying how you subscribed.
• Follow this blog on Blogger.
• Join the To The Max fan page on Facebook.
• Mention this giveaway on your blog, and post the link to your blog in a comment below.
• E-mail my husband and remind him to serve me breakfast in bed. Kid-ding! Kinda sorta.

This giveaway is open until Saturday, May 15, 2010, 11:59 p.m. EST, and is for U.S. and Canadian residents. I'll pick the two winners via randomizer.org, announce the winners the next day, and alert you by e-mail.

Good luck, glam women!

Update: And the winners are...Kim and Mommy 2 Bears. Congratulations! You're going to look even more gorgeous than you already are.

Not just a special needs mom

I've got more mom thoughts on the brain today. Including whether Dave is going to let me sleep late on Sunday, though he probably will, since he is such an awesome guy. RIGHT, HONEY?!!

But enough about me and my chronic sleep deprivation and my husband who is going to let me sleep in on Sunday. RIGHT, HONEY?!!

You know how I gave us props in yesterday's post for being able to see our kids for who they are—and not as kids who have disabilities? Today, I've been thinking about how I don't necessarily want to be seen as a mom of a kid with special needs.

I know, I know—I write this blog. I am way out of that closet, which is exactly where I want to be. But is it crazy to wish that people understood having a kid with special needs doesn't define me as a person? It keeps me plenty busy, to be sure. And yet...

I am a mom just like any other mom, in many ways.

I am a woman just like any other woman, in many ways.

I am not someone to be pitied or stared at or whispered about or avoided because you think that my life is so different than yours is.

And on Sunday, I am going to be a woman-mom who gets to sleep late. RIGHT, HONEY?!!

Flickr/Flipped Cracker

Top 20 Reasons Moms Of Kids With Special Needs ROCK

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

But wait, we're not done!
20 more reasons moms of kids with special needs ROCK

For a printable copy, e-mail lovethatmax@gmail.com

Mother's Day giveaway: Win a $100 Jawbone ICON wireless headset

As I pulled into the preschool parking lot the other week, I saw a mom chatting away on her cell phone as she backed her car out of a spot. Her kid wasn't in the car, but there were plenty of moms walking around the lot with their children. I was really annoyed. Talking on a handheld phone while you're driving is dangerous (and it's also illegal in our state). Research has shown you are four times more likely to get into a car accident if you're driving and talking on a cell phone. And don't even get me started on blockheads who text and drive.

Dave does most of the driving (despite my squawking about his driving skills, or lack thereof), and has been using a wireless headset for years. He's tried a bunch of different kinds, but he's never been thrilled with any of them. Then Jawbone sent us two ICONS to test-drive, and now we're both hooked. They're the only Bluetooth headset out there that has high-tech background noise reduction, and they definitely do the job. People hear you completely clearly and without background noise even if, say, your little girl is in the backseat screaming "MAX PULLED MY HAIR! MAX PULLED MY HAIR!" The ICON is also easy to connect to your BlackBerry (me) or iPhone (Dave), and it feels comfy in your ear.


It also looks pretty cool, and can I please have a profile like hers in my next life?

Want to win a Jawbone Icon, worth $100, in any design you'd like? Just leave a comment about whether at any given moment you're more likely to be found talking on your phone, reading or writing e-mails, or texting. You can usually find me on e-mail, occasionally on a call. I never text.

BONUS entries: After you leave your main comment, leave a separate one for each of the following that you've done:
• Follow LoveThatMax on Twitter.
• Tweet about this giveaway and leave a comment with your tweet time stamp (translation for Twitter newbies: click on the time below the tweet, which shows you the URL). You can use this tweet: Win a $100 Jawbone ICON wireless headset from @LoveThatMax, ends 5/11, http://tinyurl.com/23gx5pt
• Subscribe to the To The Max feed; you can do that here, or another way, and leave a comment saying how you subscribed.
• Follow this blog on Blogger.
• Join the To The Max fan page on Facebook.
• Mention this giveaway on your blog, and leave a link to your post below.
• Add my button to your blog and post a link to your blog in the comment below.

This giveaway is open until Tuesday, 5/11 at 11:59 p.m. EST, and is for United States and Canadian residents only. I'll announce the winner on Wednesday, 5/12, and e-mail you.

Good luck! And please, don't talk on your cell phone or PDA and drive without a headset. Do it for the sake of our kids' safety, if nothing else.

Update: The winner is Stimey. Happy phone-talking!

What sort of bliss do you have planned for summer?

I'm back from my little getaway. I think I could get used to being a runaway mom.


My friend Maryellen's beach house is fab. Which is no surprise, since Maryellen is one of the more fab people in this world; if you have a chance, check out her cool new lifestyle blog, Chictionary.

The two of us had a wonderful couple of days talking, hanging at the beach, ogling various cute dogs and one precocious cat who trotted onto an elevator at a hotel, eating good food, drinking rosé (Maryellen is most likely laughing as she reads this 'cause I'm such a lightweight drinker). On Saturday Maryellen left, the kids and Dave showed up and I had weekend, part 2.


Happily for Max, Maryellen's lilacs were in bloom.


Max, of course, found a purple mailbox.

We spent an afternoon at the beach, and none of us minded the clouds. Max and Sabrina did the usual kids-at-the-beach thing—ran around, dug in the sand, looked for shells, dumped sand all over us, cried when we left. Sabrina, in one of her sweeter moments, wrote "Purple Max" in the sand.







I feel totally rejuvenated. I didn't realize how much I needed a break until I got one, and I am sure you guys know what I mean.

Now I'm thinking ahead to summer. We have a week's beach vacation planned for June. I'd also like to to find some new bike trails and do more hiking. Oh, and ice-cream. I'm thinking lots and lots of ice-cream. Max topped his own record this weekend. Dave has a friend who owns a Dunkin' Donuts/Baskin Robbins, and en route to meeting me at the beach they stopped by his store. Max not only got to help scoop his own ice-cream, he downed four cups of it. Dave did not capture the moment on film, so I am guessing Max will not be eligible for any sort of kid world record.

What sort of summer plans are you dreaming about?

My child has special needs but please don't treat him special

Today is Blogging Against Disablism Day, and people around the blogosphere are putting up posts. Disablism: discrimination against people who have a disability. The word conjures up people who do obvious jerk-like things to people with handicaps. But there's another form of disablism my son and I have experienced, a more subtle kind that may not seem like disablism at all: treating kids with special needs as if they are a whole other species of kid.

My son, Max, is 7 years old. He has cerebral palsy, which affects his ability to talk and use his hands. The cerebral palsy does not affect his sense of humor, his eagerness to play with other kids, his love for all things sweet, his curiosity about the world. He is a kid like any other kid.

The cerebral palsy does not make him some angel boy, either. He has meltdowns when you don't buy him a toy he wants, he's been known to hit you when he gets mad, he pulls his sister hair. In those ways, he is also a kid just like any other kid.

But that's not always people's perceptions. Some see him as a kid unlike any other kid.

I've had people ask if he likes to play with trucks or bubbles, as if he is playing impaired.

I've had mothers ask if he ever fights with his sister, as if he is incapable of sibling rivalry.

I've had mothers say things to their kids, in front of Max's face, along the lines of, "Honey, you can play with him, just pretend he's like a baby." As if Max couldn't hear.

Once, a stranger remarked, "Oh, that's so great he likes ice-cream!" as if his disabilities affect his potential for pleasure and joy.

I know that people don't mean to be mean-spirited when they say these things. Often, they are trying to be inclusive. But in the process of doing so, they end up making Max seem like an "other"--as in, a kid who is not just another kid. And they teach their own, typical children the same.

My son has special needs. But at heart, he is not special. He is a kid just like any other kid. Please treat him that way.