Monday, November 30, 2009

Max's hands



I've been staring at Max's hands a lot lately. They're getting so big. What happened to those pudgy baby hands I used to nibble on? I've also been watching in amazement as his hands do more and more. One of the biggest side effects of the cerebral palsy is that Max's hands are, alternately, either too tight or too loose.

Mostly, they're too tight. His left hand is more functional than the right one (since his stroke was worse on his left side, his right side is more affected). So Max typically tries to do everything with his left hand. "Two hands, Max! Two hands!" I'll say as I watch him struggle to pick up something with his left hand alone. He needs to be reminded to use the right one; it's often held tightly in to his chest, Napoleon-like. A doctor once said it would be his "helper" hand, and it's pretty much true.

Max is able to open both hands a lot more easily these days. He can't quite grasp a ball, but other things, yes. I loved seeing him hold that car above and run it back and forth. Lately he's been maneuvering a computer mouse, too.

Max has never gotten a pincer grasp, the movement that enables a child to pick up something using his thumb and forefinger. It typically kicks in when an infant is between eight and 12 months old. It didn't happen with Max, so grabbing smaller objects—say, a spoon—is tricky for him. But he manages: He'll use a cupped hand to grasp stuff then hold it in his fist. He also has trouble isolating his pointer finger, though he's gotten good at improvising that, too. He uses a knuckle to turn on the TV or push the water cooler button.

He makes it work.

As I watch Max's hands move, I sometimes think about how that's something other parents take for granted—I'm guessing many couldn't imagine what it's like to have a child whose hands can't quite do what his will wants them to. When Sabrina first held a rattle in her hands, I was amazed; I was so used to wrapping Max's fingers around objects for him.

As a baby, Max's hands were so tight and balled up. I remember Dave and I taking him to the mall once and strolling around. Inevitably, we started observing other babies. Especially their hands. "See?" Dave would say. "That baby's hands are closed!" We couldn't accept our reality. Or Max's.

Now I watch Max's hands and I'm filled with wonder that he is able to manipulate them the way he is.

I watch Max's hands and I worry.

But Max? He just does his thing, holding on any way he can.

Saturday, November 28, 2009

Happy post-Thanksgiving! And the winner of the $250 Toys "R" Us gift card is...



...SuZ, from Not Your Typical Mommy. Congratulations—I hope your little girl enjoys her Barbie Power Wheels. And happy shopping for the baby! Thanks to everyone who entered, and thanks to Bill Me Later for the exceptionally generous giveaways leading up to Toy Tuesday on December 8. I love that they're donating so much to charity. You can see a list of the 12 participating blogs here.

I'll be doing a bunch of other giveaways in December starting Tuesday, December 1, with great stuff for you—because moms deserve treats, and lots of 'em.

I hope all of you had a fab Thanksgiving. Mine was great, though I still have a stuffing hangover.


It was a gorgeous day.


My sister, Judy, and baby Margo visited. Every time I held Margo, Max got a little agitated. He'd point to himself and to me, then he'd point to the baby and to Judy—he needed to remind me that I was his mom. But he was glad to help feed her.


Meanwhile, Sabrina thought she was the mother, because she insisted on holding Margo at all times.


I take back what I said about there being no glory in cooking a turkey. I mean, the hit of the evening was the sweet potato casserole with marshmallows I made, if I do say so myself, but Dave really did cook an excellent turkey. Props, honey!


Max had to watch the sweet potato casserole cooking. He had three helpings.


It was my birthday on Friday. I'd been trying to not pay it much attention since I wasn't sure how I felt about being a year older, but then I got a whole lot of birthday messages on Facebook, including one from a well-meaning guy who said "Happy Birthday, old friend" though his real meaning was "Happy Birthday, friend who I have known for a very long time." Just for the record.






Friday, November 27, 2009

Holiday giveaway: Win a $250 Toys "R" Us gift card!



You might recall from my visit to BlogHer this summer that I did not meet Britney Spears. But I did meet this dynamo of a woman who works for BillMeLater, Sara. We've kept in touch, and one of these days I'm going to tell her about my revolutionary idea, BillMeTenYearsLater. Anyway, Sara invited me to participate in Toy Tuesday.

Sounds like fun, right? It's on December 8, when you can visit the Toy Tuesday site for major deals on hot toys and gifts from Toys “R” Us, Walmart.com, Step 2, Little Tykes, eToys, Drugstore.com, FAO Schwarz, HP, Overstock.com, MacMall, Mercantila, One Step Ahead and more. Meanwhile, in the days leading up to to Toy Tuesday, different bloggers are doing giveaways sponsored by BillMeLater. Hel-lo!

I raised my hand to write about Toys "R" Us and its Toy Guide For Differently-Abled Kids before I even knew that bloggers would get gift cards for participating, may this blog be smitten with pestilence if I'm not telling the truth. First off, I think Max should go on the cover next year. Can't you just see him on it? Second, maybe the entire catalog should feature Max as its exclusive model. Third, over the years I've found this catalog to be extremely helpful; it tells you, through symbols, which toys help promote development of fine motor skills, gross motor skills, language, and so on. I also like this catalog because it doesn't include suggested ages for toys; it can be unnerving to see one labeled "ages 1 to 4" when it's on your six-year-old's level.

A few toys I recommend from experience/a few I'm lusting after for Max:


Barnyard Animals Wooden Jumbo Knob Puzzle
Puzzles like these with big-old knobs encouraged Max to use (and open up!) his hands when he was a tot. We'd also work on making the animal sounds; "MOOOOOOOOO" was the first one he learned, and he'd repeat it so often I'd jokingly call him Moox.


The Laugh & Learn Fun With Friends Musical Table
This is a jam-packed learning center with lights, games and musical activities that encourage interaction (which will not drive you crazy—trust me, we've had toys whose sounds have driven us insane). It also enticed Max to pull-to-stand, though you can take off the legs to bring it down to floor level for kids who aren't yet on their feet.

61-Key Magic Light Keyboard
The music therapist brought one of these to our house the other day, and Max went nuts. So I know this one's going to be a home-run. Hopefully, Max will soon be able to serenade me with Springsteen songs.

Doctor Dress-Up Set
Max's imagination has really kicked in this year, and I think it's time for him to break out of train conductor mode (though the catalog has a supercute outfit for that, too). I will probably have to buy one of these get-ups for Sabrina as well or she and Max will sustain non-pretend injuries fighting over it.


30th Anniversary Cozy Coupe
After Max started walking, thanks to a gait trainer, he needed a new set of wheels. This one rocked! It helped him learn to use his feet to navigate, go backwards and turn—he cruised our 'hood in this and picked up chicks. OK, not really. But it was awesome to see him in it. This car is photo op central.

Spongebugs Kids Fun Bowling Set
Another toy I'm getting for Max. The ball has deep holes for easy grasping and the pins are made of foam, so the noise won't freak him out and I won't worry about Max and Sabrina clonking each other. Did I mention they fight?

Band in a Box
We've had something like this since Max was two, and he still uses the instruments—sometimes, oh happy day, with both hands. This one has maracas, cymbals, a triangle and rhythm sticks.


Moon Sand Royal Castle
One of Max's occupational therapists recommended this stuff to us. It's a sand-like compound kids mold to make different shapes, so it's a good sensory experience that also gets them to do fine-motor stuff. Beach not included.

What kind of toy are you most eager to get for your child this year and why? Leave a comment about that by midnight tonight; Bill Me Later will randomly pick one commenter to receive a $250 gift card to Toys "R" Us (you can use it at the store or online), and I'll announce the winner by 1 p.m. EST on Saturday. Bonus: BillMeLater will select three local charities and allow the winner to choose one for a $500 donation. Please note, you must include an e-mail if you do not have a Blogger account.

The next giveaway from BillMeLater will be at First Time Around; head on over tomorrow for a chance to win a $250 gift card to eToys.com and another $500 charity donation.

UPDATE: This giveaway is closed.

Thursday, November 26, 2009

Oh, happy day



As you read this, I am most likely roaming the web, trying to decide on side dishes to make for Thanksgiving. My main criteria: Which one I won't mess up. My mom, sister, husband and baby Margo are going to be coming over; my dad wasn't up for traveling, but he's content to be at home and will surely be giving thanks for his special hat.

The turkey, I buy from Whole Foods—it comes prepared, you just shove it into the oven. I see NO glory in cooking a turkey. When's the last time someone said to you, "What an absolutely amazing turkey!" Never, right? But if you can whip up some amazing stuffing or sweet potato and marshmallow something, people will think you are a cooking goddess, even if in reality you are actually a takeout goddess.

I found this yummy recipe for Marshmallow Sweet Potato Casserole from Cook's that I'm going to make. Max will probably eat most of it; since he was a baby, he's loved sweet potatoes. When he was about nine months old, I took him to the pediatrician for a visit. He pointed out Max had an orange tint; I hadn't even noticed. Anyway, if any of you have recipes of your own to share—or links to ones—that are impossible to mess up and won't turn us funny colors, let me know.

Oh, and here's something fun for T-Day morning: Want to hear your kids expressing their thanks on TV? The Sunny Side Up Show on Sprout is featuring a thanks-a-thon. Sproutlets (with help from you) can call in, speak live with the show host, and say what they're grateful for. The phone number is is 877-91CHICA, and it's open from 8:45am today till 12.

Tomorrow is Fuchsia Friday on my blog (Black Friday just sounds so bleak), and I'm giving away a $250 gift card to Toys "R" Us, so come on by.

And, one mo' thing, thanks to whoever nominated this blog for Divine Caroline's "Love This Site" Award. If you'd care to vote for To The Max, you can do it here. If you don't care to vote, Max and I will still like you anyway, but Sabrina might be miffed.

Happy, happy Thanksgiving to you and yours!

xo

Wednesday, November 25, 2009

A kid with autism rides the subway for 11 days straight



I was listening to the news tonight, and was horrified by this story: A kid who has Asperberger syndrome, a form of autism, recently rode the New York City subway for 11 days straight. Francisco Hernandez Jr. got in trouble at school and fled, worried he'd also be in hot water at home. As his family searched frantically for him, he rode the train, subsisting on foods he got from newsstands. For 11 days, nobody questioned him; finally, a transit cop ID'd him.

When I hear stories about kids with special needs who wander off or disappear, they haunt me. They never did find five-year-old Hassani Campbell, the missing boy in California who has cerebral palsy.

As a parent, you obviously do anything possible to protect your child. But when you have a child who's more helpless than others, the responsibility that lies on your shoulders feels that much greater.

Photo by Jag9889

Tuesday, November 24, 2009

Let the toy shopping begin!



A friend of mine passed along the following info for shopping on Hasbro.com; the prices are already discounted, and you save an additional 20 percent, plus there's a flat $4.99 shipping rate.

1. Shop on www.HasbroToyShop.com and add items to your shopping cart
2. Enter promo code FAMILY2009 in the grey box on the Payment/Shipping Page
3. Click the "Adjust My Price" button to show your savings then click the "Continue" button at the bottom of the page to complete the check out.

When you're not out shopping on Friday, swing by here; I snagged a $250 gift card to Toys "R" Us I'm giving away!

Photo by krysta_O

Gratitude



Thanksgiving is my favorite holiday, and not just because I get to eat lots and lots of stuffing. I love it because it's a no-pressure holiday where you can hang with your family, enjoy each other's company and zone out in a communal tryptophan stupor. Thanksgiving is also right around my birthday, this year it's on Friday. No need to send presents. Or stuffing.

Anyway, I feel like I have a lot to be thankful for this year, especially with Max. I'm grateful for...

...the sound of "OHMMMY"—hearing Max call me that thrills me every single time...the stem cell transplant...Max's determination to try, try and try again, no matter how difficult the task may be...the Little League Challenger Division...the color purple...Max's bright eyes...his ability to turn on a computer by himself and navigate a game...his recognition of how to spell his name and pronounce the letters M-A-X...his growing comprehension in every area...his newfound ability to climb and descend stairs, with only a little help...his singing, another new skill...his love for chocolate ice-cream, which he asks for by name...his blossoming independence in every area...his big, slurpy, open-mouthed kisses...the fact that he has proved those pessimistic doctors wrong, wrong and WRONG. Oh, if they could see him now.

What's on your gratitude list about your kids?

Monday, November 23, 2009

Another totally mortifying Mommy moment



It's Sunday morning. Sabrina and I have just whipped through Target, and now we're on a crowded checkout line. She's sitting in the shopping cart holding my big, brown slouchy purse; I've let her rummage through it to pass the time and prevent her from eyeballing the candy for sale.

"MOMMY, what is this?!"

She's holding up a tampon, holding it up high as if she is the Statue of Liberty raising her torch.

"It's for mommies," I mutter, and make a grab for it. Only she moves it out of my reach. I had no idea she could move that fast.

"MOMMY, what's it for?"

I manage to grab the thing and shove it back into my purse. Only now Sabrina is having an epiphany.

"OHHHHHHHHHH, MOMMY, I see you in the bathroom using that!"

I look down and try hard not to make eye contact with anyone standing nearby. Then I start giggling.

"MOMMMY, what's so funny?"

It takes forever to get to the checkout line.

Photo by StaceyRebecca

Friday, November 20, 2009

Who's more emotional about your child: you or your husband?



I was in Babies 'R Us recently to pick up some stuff for Max. It's not a trip I enjoy; when I'm there, I think about the fact that Max is almost 7 and he still needs baby-ish paraphernalia like Bibsters, cloth bibs, those plastic bowls with suction-cup bottoms.

The nice woman behind the checkout counter struck up a conversation about what a great invention the Bibsters are. She has a one-year-old, and I was sort of praying she wouldn't ask how old my kids were, I just didn't want to get into it. She didn't.

As I left the store, it occurred to me that I should just send Dave to get this stuff. He wouldn't think twice about it. He doesn't think twice about any care or help Max needs. I've mentioned before that sometimes, feeding Max stresses me out, part of which has to do with the fact that I get unnerved that my little boy has trouble eating. Not Dave. He cheerfully feeds Max all the time.

Sometimes, it feels like this disconnect between us, me getting all emotional about certain things, Dave being matter of fact. But that's also what balances us out.

What's the balance in your relationship? Who's the more emotional one?

Thursday, November 19, 2009

The single Army mom who refused to deploy



Today, I read about the Army mom who refused to deploy to Afghanistan because she had nobody to care for her 10-month-old boy. As a result, she might face criminal charges. Alexis Hutchinson, 21, says the only family she had who could pitch in, her mom, was already caring for other relatives with healthy problems. According to her lawyer, one of her superiors knew about the situation, and said she'd have to deploy anyway—and put her son in foster care.

So Hutchinson, an Army cook, didn't show up for her flight.

An Army spokesperson's response: He didn't know what her commander had told her, but they wouldn't deploy a single mom without childcare.

The facts are still emerging with this story. But it's disturbing, isn't it?

It makes you think. About all the deployed moms and dads. And the sad state of childcare in our country. And what you'd do if you were in a similar situation.

I probably wouldn't have shown up, either.

Wednesday, November 18, 2009

Why I'll never be one of "those" moms



There's a comment that's been haunting me. It's from the post I did about making Max a so-called costume from a purple Bed, Bath & Beyond bag. Kara called me "crafty" and said, "It seems that you have joined the ranks of Those Mommys!!"

Kara, I fear that I have misrepresented myself. Because I am actually not one of "those" crafty moms. I am also not one of those dress-the-kids-to-perfection moms. Or one of those must-make-kids'-meals-from-scratch moms. Or one of those so-on-top-of-everything moms. And because I'd never want to get sued by one of "those" moms for making false claims, I am hereby providing irrefutable proof that I am not one of "those" moms:

• When the kids aren't in the moods for baths, or when I am not in the mood for giving them a bath, I have resorted to a diaper-wipe shower—you grab some wipes, you wipe them down.
• I have let Max have a dish of ice-cream for dinner...and an ice-cream sandwich for dessert.
• Their baby scrapbooks? I never made it past "Mother's name, father's name, baby's height, baby's weight."
• Come to think of it, I am not even sure where their baby scrapbooks are.
• I have put Max's shoes on the wrong feet while he was wearing his braces (which are supposed to help you walk better, which is kinda hard to do when your mother has put your shoes on the wrong feet).
• I have let Sabrina pluck a shirt/pants/dress from the laundry and wear it again. Thankfully, she has not yet begged to re-wear underwear.
• When the kids' pants are too long, I just roll them up. Presto! Hemmed.
• I have refused to read certain books to the kids because I am bored by them. The books, not the kids.
• As a serial evening snacker, I have eaten the last of the kids' cheese crackers. I have also polished off their Cheerios, their cookies, their chocolate pudding and once, in a tragic turn of events, the macaroni and cheese we brought home from the diner that Sabrina was going to finish up the next day.
• I never, ever have tissues in my purse, Band-Aids, cough drops or anything remotely useful.
• When Sabrina has gotten a knot in her hair, I've been known to cut it out rather than try to patiently comb through it.
I have thrown out pictures the kids have made.
• The last time I organized the kids' playroom was in June. Or was it January? I can't be sure.
• I murdered the kids' goldfish. I know, I have spoken about this before, but I am clearly trying to work through the grief. Bear with me.
• I once accidentally sent Max to school on class picture day in ratty sweatpants and a stained shirt.
• I have let Sabrina watch three Hanna Montana shows in a row. I hope she does not someday require therapy for that.
• When the kids have celebrated their birthdays at school, I've bought cupcakes from the store and put them in my own box.

Sooooo, are you one of "those" moms? Or do you fall into my camp? Share!


Photo by bankgrrl

Tuesday, November 17, 2009

Max has a phone conversation

video

Max has been doing a lot of pretend play lately, and it's fascinating. But as I watched him on the phone the other day, I wondered: Who was he pretending to talk with? What made him crack up like that? At times like these, I long to know what is going on inside his head; it makes me wistful that I can't be in on his joke. Especially when Sabrina's right there prattling on. Then again, it also makes me happy to see Max talking like he does and expressing himself.

Wistful-happy: that's me, sometimes.

Monday, November 16, 2009

Sometimes Max is bratty...and I like it



Congrats to the winner of the Pottery Barn Kids gift card: Kimberly, from Driving With No Hands. I hope you get your cute kids lots of cute stuff! I'm going to do a bunch of giveaways throughout December—treats for the kids and for you—so stay tuned.

This weekend was especially fun because Dave and I had a playdate. We snagged tickets to see a dress rehearsal of Saturday Night Live which takes place from 8 to 10 and is even better than seeing the live show (IMO). January Jones hosted; I don't watch Mad Men, so that wasn't a thrill. But Fergie and The Black Eyed Peas were the musical guests, and they rocked the house. Seth Meyers is very cute in person, I have to say. I think Dave has a crush on Kristen Wiig.

The kids had a good time, too, this weekend. Dave promised Sabrina a rip-off cupcake maker called Girl Gourmet—how annoying is that name?! What about Guy Gourmet? Let's teach men to cook from a young age! Yeah! Anyway, Dave got it for Sabrina last week, and the kids have been making cupcakes up the wazoo ever since. They'd make them in the bath, if I let them.


Sabrina making the cupcakes.


Taste-testing.


We made a special frosting mix with purple sugar for Max (note the purple shirt, and the purple cookie-dough scooper he's holding up above, he is still in the throes of his purple period). Sabrina did not like that Max got special frosting, not one bit. Nuh-uh. Worse, he kept holding up the purple sugar and showing it to Sabrina.


"I WAAAAAAAAAAAAAANT PURPLE SPRINKLES!"

I secretly like it when Max teases Sabrina. She does it to him plenty, and it's heartening to me that he's got the smarts to torture her right back and show her that she can't push him around. Is that wrong of me? I don't care. Max may have special needs but he's made of strong stuff. Some of which is probably purple.

Dave even put some purple sugar in water, and Max had purple water.

It was a very good weekend.

Friday, November 13, 2009

The dog ate my blog post

OK, that is not the truth.

We do not have a dog. We never even replaced the fish I murdered.

I am just a little too pooped tonight to write much. I am pooped, perhaps, because it is 1:04 a.m. Curse you, third cup of coffee.

So I will leave you with these pics from the photographer Peter Miller, who recently came over to snap Max and Sabrina.

Have a fun-filled, love-filled weekend everyone.









Thursday, November 12, 2009

Sablog: A "blog" by Sabrina, age four. First manicure!



So, do you like your nails?

Sabrina: "Yeah."

Why?

Sabrina: "Because they're pretty."

What color are they?

Sabrina: "Purple with light pink. Bofe of them." [She cannot say her th's so "both" is "bofe."]

And who likes purple?

Sabrina: "Max does."

And is that why you got purple?

Sabrina: "No."

Why did you want me to polish your nails?

Sabrina: "Cause I wanted them to look beautiful. Abbie polishes her nails. She does. Don't you know that?"

I didn't know. Should we polish Max's nails, maybe?

Sabrina: "No. Because boys are a boy because, uh, they're taller than girls."

What polish do you want to do next?

Sabrina: "Another pink that's darker. Yipppoooooo!"

After this blog was recorded, I was forced by Sabrina at watergun-point to drive her to Target and purchase glittery polish. Then she made me open the bottle and cover the purple polish with the glittery one right then and there. Uh-oh, I am in for it.

BTW, there's still plenty of time to enter to win the Pottery Barn Kids gift card.

Wednesday, November 11, 2009

"Oh, mom, leave me alone!"



Some students at a local college are raking leaves in our neighborhood in exchange for a donation to Habitat for Humanity, a favorite cause of mine. I signed up, and two guys and a girl came over and plowed through our front and backyard. Max was right out there with them. He helped rake. He dumped leaves onto the tarp. He helped drag the tarp to the curb.

When I stepped outside to take pictures of him, Max shook his head and waved me in. I tried to hide behind a bush (he looked so cute, I really wanted more photos), but he spotted me and again told me to go inside. I just barely snapped this pic.

Max wants independence. Of course he does. It's something I forget sometimes, because he's still dependent on us for a lot of things—feeding, dressing, diapering. But he's going to be 7, soon. And inside that body is a little boy who wants to be free to do things alone, without his mom or dad. Like any other 7-year-old.

It's me who needs to work on this independence thing. Because every inch of me wants to hover around Max, help Max, take care of Max. I've been in overdrive for years.

I know I have to let my baby grow up, in whatever ways he's ready to.

I have to let go.

Tuesday, November 10, 2009

Nice hat, Dad!



I saw my dad on Sunday. He's 86 and a little out of it at times, but he's still plenty smart and generally not doing so bad. Especially considering the hat he was wearing.

"Um, is that a pot plant on my dad's hat?" I asked the woman who helps take care of him.

"Yes, it's ganja!" she said, cheerfully. She's from the islands, so she knows what she's talking about. Seems like she's been wheeling him everywhere in that cap. For a year now.

"Who got it for him?" I asked.

"Your mother," she said.

Hmmmm.

I called my mom.

She told me she had a pair of pants to return to some discount-type store; the place wouldn't give her cash, so she decided to pick up a few things instead. Including this bargain $1.50 ganja hat. "Mom, what did you think that design was?" I asked. "I thought it was a maple leaf, like on the Canadian flag," she said.

I pondered the hat. What the heck, I thought. I mean, I don't want anyone mistaking my dear old dad for a weed dealer, I wouldn't let my mom buy ones for the kids and I'm not condoning ganja or anything, but there's something to be said about being the hippest 86-year-old in the whole hood.

Monday, November 9, 2009

Pottery Barn Kids giveaway—my thanks to you!



First off, the winner of the Buzzy (the device that helps make shots less painful for kids) is Cristin, from Tiptoeing Through The Tulips. I hope Graham uses it, er, in good health!

When I won The Bump's award for Best Special Needs blog, I said I'd give away the $100 Pottery Barn Kids gift card. Ta-dah! It came in the mail on Saturday, with a nice note from the woman in charge of the awards.

To enter, just leave a message below for Max. Because he's the star of this blog (don't tell his little sis!) and someday, I hope he can read all of your words for himself. Note, if you do not have a blog you must leave your e-mail in your comment or I won't know how to find you; I do not possess heat-seeking missiles. I'll pick a winner by next Sunday and announce it on Monday the 16th.

Oh, and word to my best friend Hedy: happy, happy birthday.

Friday, November 6, 2009

Max's other mom



So, Max's teeth keep falling out but I haven't been able to save a single one; we think he's been swallowing them. Leave it to our nanny, Linnette, to actually snag a tooth when it came out today.

"Nanny" always sounds so pretentious to me but Linnette is so much more than a babysitter. Actually, "Max's patron saint" would be a much better description. That's her above, with Pumpkin Max at nine months old.

I hired Linnette even before Max was born; she sort of fell into my lap, referred by a friend of a friend. I thought she was kind, competent, sensible, good-hearted, and a little bit proper, which I adored about her. Then Max was born and we spent two weeks in the NICU. I called and told Linnette there had been some problems at the birth, but I was scared of telling her the truth. Hell, I didn't even know what the truth was. My newborn had a bilateral stroke at birth and resulting brain damage—that much was true. He was going to have challenges, but I didn't know how severe they'd be. Nobody did. Would Linnette want to quit? Just the opposite: Linnette was in. She said she'd do whatever she could to help Max along. I think she fell in love at first sight, which wasn't too hard. Max was a heartbreaker from the get-go.

After I returned to work from maternity leave, Linnette sat through Max's therapies. She exercised his stiff arms and legs, helped him hold toys when he had trouble grasping them, spoke to him and did everything she could to stimulate his brain. Over the years, I've found that she's been able to handle certain things in a more level-headed way than I can. Feeding Max, for instance. It's still an emotional issue for me, even more so when Max was very young. It took such a long time to feed him, since he didn't have good tongue coordination and kept on pushing out food with his mouth. I was always so concerned he wasn't getting enough to eat. And I was unnerved. Eating seemed like the most fundamental, basic thing in the world for a kid to do. It was upsetting that Max couldn't do it well, although now I understand just how cerebral palsy affects a child's ability to use his tongue muscles. Max's issues with eating were an undeniable reality: I had a child with disabilities.

Linnette didn't see things this way. To her, Max needed to be fed, period. Calmly, she would feed him. And feed him. And feed him. She still does, to this day.

I'd heard about a "Care Hero" contest on Care.com where you can nominate caregivers who've gone above and beyond to care for people they love or work for. So, I nominated Linnette. I'm hoping she'll be a semi-finalist. In my dreams, she'll win the grand prize, which includes a hotel stay, tickets to a show and dinner. If you have someone in mind to nominate, here's the Facebook page. Also, this weekend, Care.com is giving free access to the site, where you can check out profiles of approved local caregivers.

Who's the babysitter in your life who you trust most?

Thursday, November 5, 2009

Would you like fries with that?



Sabrina has a new favorite sandwich: peanut butter on whole wheat bread with lettuce and a sprinkling of M&M's. I say, whatever!

I have a very open mind about my kids and food: I think they should be exposed to—and enjoy—all kinds. Growing up, my father was into health food (way before it became fashionable), and he was fond of saying charming things like, "Sugar is poison!" Which of course meant that the second he dropped my sister and me off at a Sunday weekend activity program, we'd make a mad dash for the vending machine and buy candy bar after candy bar.

So, no food is off limits for my kids.

Max's favorite eats:
• Avocado
• Chicken and rice
• Chocolate ice-cream
• Sweet and sour soup
• Meatloaf
• Hamburgers
• Chocolate ice-cream
• Sweet potatoes
• Pancakes
• Berry fruit shakes
• Chocolate ice-cream

Sabrina's favorite foods:
• Pickles
• Breakfast cereal (most any kind)
• Chicken nuggets
• French fries
• Grape tomatoes
• Hard boiled eggs
• M&M's
• Pink ice-cream (whatever flavor, as long as it's pink)
• Chicken salad that we tell her is tunafish (we don't want her downing too much tuna)

On weekends, we sometimes hit McDonald's for lunch. Dave and I get salads; I like the Southwest kind with grilled chicken (I've looked up the nutrition info, it's a respectable 320 calories and 9 grams of fat). Typically, I try to grub a McNugget off Sabrina and typically, she says "No!"

When I went to BlogHer's conference in Chicago this summer, I met a really nice woman, Maggie, who works for McDonald's. She recently invited me to a local McDonald's for a tour. I actually got to go behind the counter; haven't you always wanted to do that?! I was impressed by how clean everything was and surprised to see they made salad orders from scratch. I also got to help make a batch of fries (I know, I am getting to be so wild and crazy lately). And I found out you can customize orders—so if, say, you want a Big Mac without the bun and with balsamic vinaigrette, no problem. Or you can get an Egg McMuffin with no butter. Someday, maybe McDonald's will figure out a way to make four-year-olds share their McNuggets with their moms.

What's your general philosophy on your kids and the foods they eat?

iphoto/Aleksandr Stennikov

Wednesday, November 4, 2009

Help! I can't stop organizing! Plus, the first Special Needs Swap Shop



Lately, I have been on an organizing bender:

• I organized the piles of paper in our attic/office, some of which dated back to 2000.
• I organized the three cabinets in the living room wall unit (aka The Black Holes).
• I organized the kitchen pantry—a completely annoying pantry since the shelves are deep but they do not slide and as it turns out I like to hoard spaghetti sauce, although I wasn't aware of it until I kept pulling out jar after jar and there were, I am not kidding, 26 jars. If there's ever a spaghetti sauce shortage in the world, you know who to call.
• I organized four closets.
• I organized the basement and, evidently, I like to hoard light bulbs, too. If there's ever a light bulb shortage in the world, contact me.

My good friend Denise told me that if I get the urge to organize my sock drawer, it's time to get a life. I didn't have the guts to admit I'd already spent a half hour organizing my underwear drawer.

Putting things in order and tossing stuff frees my mind, which is very cluttered. I've also uncovered some great things from Max's early years that I forgot I had. Including the above Pony Gait Trainer, the contraption that helped Max learn to walk; it's for kids up to age 3. I can't find any photos of him actually using it, but I did dig up one of him in his other preferred method of transportation back then:



Here's what I'm thinking: I'd like to give this Pony to the first person who e-mails me about it, you just pay for the postage (be warned, this thing isn't light, but it is in good shape). Obviously, you should first check with your physical therapist about whether this is the right gait trainer for your child.

I'll be offering up a couple of other things from Max's past in upcoming weeks. And if you have something that you'd like to give away that might help a kid with special needs, send me an e-mail with a writeup of what the item is and a photo. Also, if there is something that you're seeking for your child, send me an e-mail with a description of what it is. I'll start doing occasional Swap Shop posts and somehow we'll make it all work!

UPDATE: The Pony Gait Trainer has been taken.

Tuesday, November 3, 2009

Encore performance: Max & Sabrina sing "Part of Your World"

video

This is the first time I ever heard Max sing an entire song, and it made me cry. He's totally carrying a tune—well, as much tune as Sabrina is carrying, anyway. I was also astounded to see him and Sabrina getting along for three whole minutes. Joanne, Max's wonderful music therapist, taped this today.

And yes, Max needs a haircut!

Monday, November 2, 2009

The swine flu shot: we caved



OK, last you heard from me on the topic, we weren't getting the kids the H1N1 vaccine.

Then a school near us was shut down for a day because kids were getting infected and Dave—who is typically very laid back—started getting on my case about the shot. On Saturday, he called our state's Department of Health and found it was offering the vaccine at a senior citizens center 45 minutes away.

My resistance was weak. Typically, I am not a person who gives in to panic. And there is a whole lot of panic surrounding the swine flu, much of it founded on wrong or irrational fears. But in the end, I felt I would be doing my kids a disservice to not protect them from it. Max is prone to getting sick during the winter. Also, my kids receive the regular flu shot, and from what I've read it seems like the H1N1 version is similar in nature even though it hasn't been tested for very long. Important disclaimer: I am not a medical expert. I almost failed 7th grade biology. Please read up on the vaccination and make your own decision.

And so, we got the swine flu shot. I waited on line in the cold, drizzling rain for 45 minutes [insert mournful violin music] while Dave took the kids for lunch.


Once I was at the front of the line, we whisked the kids in and they promptly lost it. Only I had a secret weapon.


This is the Buzzy, a device invented by Dr. Amy Baxter, a pediatric emergency doctor. It's supposed to "take the sting out of shots." First you put a cold pack (included) near the area where your child is getting the shot. Next you place the Buzzy there, flick on a switch and it starts vibrating. Basically, the buzzing is said to "confuse" the body's nerves and distract attention away from the shot, reducing or eliminating sharp pain. It costs $34.95, plus shipping.

I'd told the kids about the Buzzy before we went, and let them see how it felt. I think it definitely made the shot less painful—they basically quit crying seconds after they got it, as opposed to their typical drawn-out sobbing fits. Although I wish it came with a magic wand to make kids stop wailing in anticipation of getting a shot.

So, this is my favorite new battery-operated vibrating device (snicker snicker). And I have one to give away! Just leave a comment about where you stand on the swine flu vaccine (include a contact e-mail if you don't have a blog). Have you changed your mind, like I did?

Update: I'll pick a winner by Sunday!

Photo by Charlie Charlton

Sunday, November 1, 2009

The flip-flop lollipop purple Halloween



Things often don't turn out the way you expect, as many of us know—but that doesn't mean they don't turn out good. That pretty much sums up our Halloween.

I'd gotten Max a crown at Michael's to go with the car costume I made him. He loved the thing so much he slept in it.


Max couldn't wait for all the kids to show up at our door. On Friday, he separated the purple lollipops from the others and put them in a bowl. Only when kids showed up, he'd yank away the bowl because he didn't actually want to give away any of the purple lollipops (he was into the "trick" part of Halloween). So he gave them other treats. Today he was still walking around the house with that bowl of lollipops, which he keeps in his room.


We attempted to go to our town's Halloween parade (it's more like a thousand kids and parents zooming around from store to store grubbing candy). Sabrina dressed up as Ariel. We had a stand-off over her flip-flops, which she still insists on wearing. "One more week!" she begs, every week. I gave in. Then we got to town, someone said "Ooooh, look at that cute Ariel!" and Sabrina burst into tears. She was inexplicably weepy/grumpy for the rest of the afternoon. Max wasn't having any of it, either—he didn't want to put on his costume. He just wanted to hang out in the parking lot. We didn't stay very long.


Princess Puppy was in a better mood than Sabrina was.


Halloween day itself was fine. "It's better today," as Sabrina said. The kids decided they didn't want to wear costumes, though Max wanted his crown. And Sabrina, of course, wanted to wear her flip-flops. So we told everyone Max was Max from Where The Wild Things Are and that Sabrina was a stubborn four-year-old.


Our very fun neighbors: Greg was a seventies guy, Gyneen a seventies girl and Jessica was a cute cat. Greg kept spraying Bianca into his mouth and saying, "How yoooou doin'?" He actually grew those sideburns.


Sabrina needed to roll around in the leaves for a while.


She cozied up to this display. At one house, a guy had all his treats in a purple bucket. Well, Max fell in love. He kept pointing to the bucket, then to himself. "He's in a purple period—you know, like Picasso's blue period," I explained to the guy. "You want to trade buckets?" he asked.




So, that was our Halloween.

Time spent transforming a purple Bed, Bath & Beyond shopping bag into a purple car: One and a half hours
Amount of time Max actually wore said purple costume: 9 or so minutes
Time spent arguing with Sabrina over the flip-flops: 6 minutes
Time spent explaining to Sabrina why she couldn't eat candy for breakfast: 4 minutes
....or ice-pops: 2 minutes
Calories spent on candy (me): One katrillion.
Fun with kids: Priceless.

What do you guys do with all the leftover candy? I'm going to call a local homeless shelter to see if they'll take it.


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