Saturday, October 31, 2009

Celebrating the can-dos

Max's latest accomplishment: He's been throwing things upward—check out the bean-bag action! His occupational therapist recommended we get a bunch, along with a CD called Bean Bag Activities & Coordination Skills (catchy title, I know). The music's fun, and although Max doesn't always exactly follow the games, he's getting good practice holding and tossing. Guess which color bag he always wants? "Ur-ul!"

Sometimes, as weird as it may sound, I don't even realize Max hasn't been doing something until he actually starts doing it. Like this. It just never occurred to me that Max was a kid who couldn't toss a ball up.

This is an accomplishment for me, too. I've come a long way from the early years with Max, when I mostly focused on what he wasn't doing. I was so filled with anxiety about Max's delays. I was so freaked about what the future held.

Obviously, I still have my concerns. Lately I've been wondering when and how Max will be able to read and write. But I don't sit around despairing that he's not doing that stuff yet. Max is young; he still has lots and lots of time. Me, I've developed lots and lots of patience. Obsessing over the can't-dos sucks you into a vortex of despair; celebrating the can-dos keeps you going.

Friday, October 30, 2009

Welcome to my craft blog! Ha, ha, ha

I won't keep you in suspense any longer about what kind of costume Max decided on because I am sure you were lying awake last night, wondering. Max wants to be a purple car for Halloween ("Ur-ul ahr!" in Max lingo). Not a grape or a blueberry or a raisin or The Grimace or a One-Horned, One-Eyed Flying Purple People Eater. Or Harold and The Purple Crayon. Not even The Color Purple, though I reassured him it was OK that he did not resemble Oprah.

So, I made him a purple car.

The kids were at school, and I had the house to myself. I lit a candle and put on classical music (Handel's Water Music).

I got out the poster board I bought at Target (54 cents each)...

...and the pack of ribbons ($1).

I put the two boards on top of each other and cut out a car shape. Then I covered the front of each with the Bed, Bath & Beyond purple shopping bag, taping and stapling it on.

I rolled out a steering wheel from aluminum foil and covered that with purple shopping bag, too.

Then I went to cut the ribbon, so I could hang the car cut-outs on his shoulders like a sandwich board. And I had the epiphany that when you buy six spools of ribbon for $1, you do not get a whole lot of ribbon. Just look at the amount of shopping bag Bed, Bath & Beyond gives you! And it's free!

Saved by my bag o' ribbon.

By then, I had a mess of stuff lying all over the kitchen table, and a piece of bag too close to the candle caught fire. That was interesting.

Then the costume was done. But I just wasn't sure about it. I mean, it pretty much looked like...a shopping bag costume. Of indeterminate costume. Then Max came home and I got all excited and couldn't wait till Halloween, I had to present it to him right away.

Max wasn't sure what to make of it, at first. But he sure did love the steering wheel.

The front bent, so that you couldn't quite tell it was a car. It looked like, maybe, a big piece of a purple puzzle.

The back didn't look half bad.

Then Max's occupational therapist, Nafeesa, came by. I decided to test her. "Nafeesa, can you tell what Max is?" I asked.

She stared at him. "Well, he's purple!" she said, enthusiastically. A minute later, it dawned on her. "He's a car!" she declared. "Wow, where did you get that shopping bag?"

So I guess two things are clear: 1) There's no doubt Max is walking around in a costume made out of a shopping bag, and 2) This is an interpretive costume. Some people might look at it and see a purple fruit. Of indeterminate fruit. Some people might see a purple can. Some people might see the color purple. Some people might see Oprah.

No matter. Because Max is a purple car, and Max is happy.

So, how are your kids dressing up this weekend?

Thursday, October 29, 2009

A mind of his own

In case you are wondering what happened to all of your great ideas for workouts, I have been giving serious consideration to each and every one, and I think that might take me at least two more years because there were so many suggestions.

I was also floored by the outpouring of suggestions for how to turn a Bed, Bath & Beyond shopping bag into a Halloween costume. Wow, you guys sure are crafty! I also have a lot of those twisty-tie things that come with garbage bags floating around the kitchen. You think maybe there's something I can do with those?

I had my favorites—Harold & The Purple Crayon, a bunch of grapes, a blueberry, a raisin, a shopping bag and, of course, The Color Purple (I wasn't sure, though, that Max could pass for Oprah Winfrey). But it didn't matter what I wanted. Because Max has purple on the brain, and he had a vision. I ran the suggestions by Max, illustrated by some photos I'd find online. He considered them all (maybe not quite as thoroughly as I have been mulling over the exercise possibilities), and made a split-second decision. I do not want to give it away here, but I'll just say that to those of you who know Max, you will not be so surprised.

Wednesday, October 28, 2009

Dance party on Mommy's bed

Max gets so proud of himself when he's able to balance on our bed and bop around with Sabrina—he's really getting the hang of bobbing his knees up and down, a new achievement. I'll bet he'll be able to jump, soon. Do you think they have a future as rap stars? Oh, and I have no idea what language Sabrina is speaking in the middle of the video, I don't think they're teaching her Swahili at preschool, but I can't be sure.

News flash: Today is the one-year anniversary of this blog. I'm going to get all sentimental and share the first post I ever did. I'm so happy to know all of you (hi, lurkers!) and your beautiful children, and grateful for the encouragement and great ideas you've given me—not to mention the compliments on Max and Sabrina. Those, I can never get enough of.


Tuesday, October 27, 2009

Can The Tooth Fairy collect unemployment?

Max is losing his teeth. Five, so far. He looks even cuter than usual. Our babysitter, Linnette, has been joking about getting him dentures. Only I don't have a single one of those teeth. Max has been swallowing them.

It happened last night before my eyes. I was helping Max brush his teeth, and all of a sudden there was blood on the toothbrush; I looked in his mouth and saw a gap in his lower jaw where a little tooth used to be. Only it was nowhere to be found. Max has oral-motor issues, and isn't able to spit out a tooth or notice there's one floating around in his mouth.

I can vividly recall the thrill of a loose tooth when I was Max's age; I wiggled out a few in my day. And I remember the exciting anticipation of a visit from The Tooth Fairy, who'd leave me a whole dollar in exchange for my paper-towel wrapped tooth. Last night, I got a little bummed out. Bummed that I didn't have one of Max's teeth to preserve as a memory of his childhood. Bummed that Max wasn't going to experience The Tooth Fairy—not just because he didn't have a tooth to leave under his pillow, but also because he doesn't get the concept of a Tooth Fairy. Not yet, anyway.

Then I got a grip. I was doing it again, projecting visions of my own childhood onto Max. I've written before about wishing Max could lick lollipops and jump on a pogo stick, the joys I experienced. Thing is, he's having a different kind of childhood—one that's just as happy as mine was, if not more. He doesn't need a visit from The Tooth Fairy because he is perfectly content without her. (Is it un-p.c. to assume it's a her?)

"Max! You lost a tooth!" I said. "Say 'Aaahhh.' Say 'Aaaaaaaahhhhhhhh.'"

He giggled and said "Aaaahhhhh." I got inside his mouth with a tissue and stopped the bleeding.

Then I grabbed a few of his stuffed animals and made them kiss his jaw. I kept saying "Buh-bye, tooth!" He thought that was funny, too.

Guess The Tooth Fairy is out of a job at our house.

Photo by Peter Miller

Monday, October 26, 2009

Is it wrong to make your child wear a Bed, Bath & Beyond shopping bag for Halloween?

Let's say your little boy is obsessed with the color purple. "Ur-ul! Ur-ul!" he says approximately every 4.5 minutes, because that's his way of saying "purple." And let's say you are in Bed, Bath & Beyond on a Saturday and a salesperson walks by carrying this extremely large plastic bag. And it is purple. Gloriously, stunningly purple.

"Where's that from?" you hypothetically ask.

"It's from the bridal registry," she hypothetically answers. "You want one?"

You get excited. You're not sure you felt this giddy when you registered for china. Because the wheels are spinning in your head and you are thinking, "Wow, that could make for one cool Halloween costume." You nod enthusiastically and she hands you the bag. You have absolutely no idea what you are going to do with it, but hey, it is big. And it is PURPLE.

Would that be so wrong? Wouldn't your child be purple-tastic, the very thing that would make him happy? Wouldn't it be so recessionista fab of you to make a costume instead of shelling out money for a getup your child will wear for one day? Or would it be denying your child some quintessential child right to an amazing Halloween outfit—one that's not fabricated from a free plastic bag from a housewares store? Would it be Bed, Bath & Beyond Awful?

And, out of curiosity, what sort of costume could one make with a giant purple plastic bag, anyway? Hypothetically speaking, of course.

Saturday, October 24, 2009

Fun. With. Housework.

OK, how cute are these dish gloves from Style Hive? They'd almost make washing the dishes fun. Almost.

Actually, come to think of it, they'd look even better on Dave.

Friday, October 23, 2009

Max loves the color purple

We visited Max's neurologist today, a doctor who manages to be warm and straight-shooting at the same time. Early on in Max's life, these visits would fill me with dread, because I hated the part where the doctor would measure Max's head. Max has microcephaly (a too-tiny head) from the brain damage, and I didn't want to hear that his head was barely growing. I've gotten past that worry; Max's head is still small, but it's grown, and that mop of hair sure helps! Like this doctor has always said, head size and MRI photos don't tell you everything. We need to keep our eyes on what Max is doing.

Oh, and the EEG test for absence seizures? Negative. Max stares into space sometimes, period. It's not a medical problem, though I understand why the nurses at school were concerned—it's easy to think that Max's quirks are neurological issues. Take, for example, his recent obsession with the color purple. Yes, I asked his neuro about that.

At bedtime, Max points to the flowers on the plant in our bedroom.

He looooves Harold and The Purple Crayon and squeals when we're reading Dooby Dooby Moo and we get to the page with a purple barn.

He's constantly gesturing at our driveway and saying "Ur-ul!"

"Max, you want us to get a purple car?" I ask, and he says "YES!" And then a few minutes later, he gestures at the driveway again.

Sabrina, ever the wily four-year-old, is trying to use Max's purple obsession to her advantage. She wanted to watch Spongebob Squarepants the other day (tragically, she continues to like that show), but Max said no. "Max, Spongebob has purple in it!" she told him, but he was too smart to believe her.

Anyway, the neuro says that Max's conversations about purple are simply his way of communicating. He's pleased with himself that he can say purple, so he keeps saying it.

Like any other kid, Max has a favorite color. And it's purple.

In case you didn't know, voting for Best Blog (I'm a finalist!) is still open at The Bump, you just have to scroll down and leave a comment, in purple.

Photo by Jaime Walsh

Thursday, October 22, 2009

There's a chicken bawking in our playroom

Every few hours, at night only, you hear a loud "Bawk! Bawk! Bawk!" coming from the playroom.

This has been going on for months.

I assume that a live chicken has not, somehow, gotten in there and is subsiding on cookie crumbs. I assume Dave is not secretly breeding chickens. It's one of the kids' trillion toys gone haywire. I am not even sure which one.

I just don't care. I have declared the toy room a perfect-free zone.

Sure, I like the rest of my house to look relatively uncluttered. I grew up with a dad who was a dedicated pack rat, and I used to make up for the neatness I never had. I'd spend hours at a stretch trying to match up all the pieces from the kids' games and putting things in order. No more. Arrest me, Martha Stewart!

If we've learned anything from our kids, it's that perfection actually comes in all shapes and forms. And that the word itself is highly overrated—"imperfect" can be just as wonderful. That's our playroom, one big, beautiful mess.

What sort of "perfect" have you given up?

Update: Voting for Best Blog is open again over at The Bump! This time, you get to tell them why you like this blog (if, that is, you like this blog). Here's the link, just scroll down!

Wednesday, October 21, 2009

Those thoughts you don't like to admit

Top on my list of ambitious goals on this, my first day out of work, was to sleep late. Of course, I bounced out of bed at the usual time. I cleaned up some clutter, read and sent a whole lot of e-mails, thought about exercising, solved the global warming crisis, ate some baklava I'd been saving for a special occasion (today counted as a special occasion). Friends and coworkers called throughout the day to make sure I was doing OK/didn't drink the whole bottle of Dom Perignon by myself (we're saving it till Saturday night).

Sabrina was out of her head with excitement. "My mommy's home!" she said to our babysitter, Linnette, about five times. I also overheard her telling her, "You know, when we go out somewhere and I go into the bathroom to go pee pee with my Mommy? Sometimes my Mommy goes pee pee right after me!" and realized that now that I'm home, I'm going to be privy to all sorts of fascinating revelations.

I picked up Sabrina at preschool, then went to get her hair trimmed only the place in town is closed on Wednesdays. So we wisely decided to have ice-cream. Sabrina chose "pink" (cherry ices). I got rainbow sherbet.

As we sat there, slurping, I thought, This is so relaxed. And, If Max were here, I'd have to feed him.

These thoughts hit me from time to time when I'm out alone with Sabrina, thoughts of how easier things can be with her, thoughts of how effortlessly she can do something like eat ices. I feel guilty about these thoughts; I don't discuss them with Dave or friends. I also think they're pretty normal to have. I've said before that I don't regret Max's disabilities, and I don't. But of course I want him to be able to take care of himself, for his sake and for mine.

We finished our ices and came home, and Max's school bus arrived. When Max saw me his entire face lit up and he said, "OMMMY!" We came inside and he had his afternoon snack, a 'Lil Drum chocolate cone. And he wanted to hold it all by himself.

Tuesday, October 20, 2009

What makes you stronger

OK, first, the truly good news: I won the Best Special Needs Blog Award from The Bump! Thanks to all of you for your support, thanks to the Academy, and kudos to the other nominated blogs, they're excellent (for•ev•er, Rhema's Hope and Slurping Life.) I win a $100 Pottery Barn Kids gift card, which I'll offer up as a giveaway, because without you where would I be? I am now up against the blogs in all categories for Best Overall Blog. Many seem to have bazillions of readers, so I'm guessing I won't win that but hey, I am not greedy. Want to vote, anyway? Here you go.

Now, the news that will turn out to be good, I am sure: I got laid off from work on Monday, along with a bunch of other great people. One word: recession. Today was my last day at the office. I love what I do (I'm a magazine editor), I adore the people I worked with, but I am feeling fine. Perfectly fine.

It's weird: After going through the trauma of Max's birth, I literally thought nothing could ever stress me out again. I was right, and I was wrong. I still stress about plenty of stuff, of course. I stress about Max's lack of speech, his cognition and his limited use of his hands. I stress about deadlines. I stress about our finances. I stress about my parents. I stress about [insert stress here]. Yet while I had anxiety about the prospect of a layoff, I have actually not been stressed by the reality. I can weather the big bad things, because I have weathered really big bad things: having a baby who had a stroke at birth, and having a kid diagnosed with cerebral palsy.

My pep team has been rallying:

* My mother wants to do a girls' trip to a casino (she is The World's Most Conservative Woman but once a month she takes a bus with a bunch of seniors and hits the nickle slots and the buffet, I am not sure my heart can handle that kind of excitement).
* My sister wants me to come hang with her and baby Margo.
* My friends want to take me out for drinks.
* Dave wants to break open some Dom Perignon champagne we got for our wedding. Please don't worry, I have no plans of becoming an alcoholic, although if I take The Granny Express to the casino I may have to bring a flask of something along for the ride. Actually, I just checked, we could get $159 for that bottle of champagne on ebay—wow! Good to know in case we can't swing the mortgage.

Tomorrow morning, I will be putting Max on the school bus, and then I will drive Sabrina to preschool. That's my idea of a wonderful new beginning.


Sometimes, they're best friends

Monday, October 19, 2009

Desperate parenting: Can you relate?

I was on the phone this weekend with my good friend, Paola; we studied together in Florence, Italy, when we were juniors in college. Paola's one of those people who always has the craziest stories. Her latest: Her two-year-old, Jeremy, refused to get dressed the other morning. So she drove him to preschool naked, she told me.

"You mean you put him in the car seat with just his diaper on?" I asked.

"No, Ellen. He was BUTT naked," she said. "When I showed up at the preschool, the teacher didn't even blink, it was like she sees naked kids coming to school all the time."

Desperate parenting. I have so been there, those times when you do whatever you have to do with your kids just to get by. I have changed Max in the trunk of our SUV in a parking lot. I have shoveled food into his mouth while standing in a car dealership's lot (it distracted him). My latest desperate parenting ploy involves Sabrina's preschool teachers, Marybeth and Louise. When Sabrina's having an on-the-floor meltdown, I'll say to her, "Sabrina, do you want me to tell Marybeth and Louise how you're acting?" And she'll stop throwing herself and sniffle, "Nooooooo." I saw Marybeth the other day, and 'fessed up. She laughed. She said it was OK to invoke her name, but also suggested I could say, "Now, how would Marybeth and Louise respond if you did that?" Me, I still prefer the outright threat.

What sort of desperate parenting measures have you guys resorted to lately?

Oh, and in case you're wondering what I've decided to do about the exercise thing, I'm looking into the running program Julia O'C suggested, Couch to 5K. Stay tuned! Maybe a few of us could do it all together? Maybe after Halloween?!

Saturday, October 17, 2009

I know Max loves his Daddy but....

And don't ask me what compelled Dave to ask him that!!!

After the tsunami of fitness advice on yesterday's post, I regret to inform you that I have no choice BUT to get my butt in gear and start exercising. I am going to check out Jillian Michaels' program (we do have Comcast On Demand so, once again, I have no excuse). I'm still considering jogging. I'm also considering sleeping very late on Sunday morning. Oh, and word to Felicia, I left out one very critical thing in the exercise post, which is that I LOVE TO EAT. I'm with you there, sister!

Last shameless plug of the week: I'm a finalist for Best Special Needs blog over at The Bump and the voting's still open. Just saying.

Friday, October 16, 2009

What kind of exercise do you do?

First, an EEG update: Max continues to be his usual sunny, sweet self, despite the apparatus hooked up to him. Sabrina continues to be blase, although she did ask tonight if Max's hair would be the same once the "hat" was removed.

Today at work, I took a brisk walk during lunchtime, and it felt great. It made me realize, sadly, that I barely get any exercise. Every day, I walk about 15 minutes from the train station to the office, then 15 minutes back at night. Some days, those train walks are the only exercise I get (and I'm not counting my mad dashes to actually make the train as aerobic activity).

This is so not healthy. I so have some pounds to lose. And I am soooo full of excuses. After work? No way, I want to be with the kids. Early morning? Ick. Weekends? I'd rather be with the kids. I'd rather be with Dave. I'd rather be having fun. I'd rather be having a cavity filled. I'd rather be locked in an isolation cell with Rush Limbaugh. Basically, I'd rather be doing ANYTHING else than exercising.

This kind of attitude, I realize, isn't doing much for my thighs, or the belly I got after having children (it was never flat to start with, but it is the opposite of flat now, which is to say, I have flab and there, I've said it). I also want to set a good example for the kids.

I think running is my best hope; I can just do it in my neighborhood, and 30 minutes isn't that long but I'd get a good workout.

Please, inspire me: What kind of exercise are you doing these days? And if you are not really doing anything, either, I will find that immensely reassuring. But then I will make you start an exercise program with me.

istock photo

Thursday, October 15, 2009

Screw you, brain damage

What a nutty day. Our babysitter stayed home sick, so I scrambled to drive Sabrina to preschool and head into work and Dave took Max to get hooked up for the ambulatory EEG (they're checking for absence seizures). Max screamed bloody murder the entire time they glued the wires to his head. I don't blame him. And that cap! Can you say fashion faux pas? Good thing Max isn't dating yet. And too bad I read Cindi's suggestion yesterday to have him wear underwear over his head only after Max was en route, that would have been ever so much more fab. Next time! Tonight he fell asleep (in my bed, where else?) comfortably enough on his side, the backpack holding the monitor propping him up.

I decided to broach the topic with Sabrina.

Me: Why do you think Max is wearing that special hat?
Sabrina: "Because he's sick."
What's wrong with him?
Sabrina: "He, uh, he, uh, I don't know. Just talk about me now."
What would you like to talk about?
Sabrina: "I'm going to talk about, I'm sick and I have a runny nose. And I'm sneezing a lot."
Do you need to go to the doctor?
Sabrina: "And my nose is stuffy all the time."
Do you need to go to the doctor?
Sabrina: "No. It's almost better."
Do you want to talk more about Max?
Sabrina: "Max likes trucks and he likes to play with them and likes to line up them. I don't like Max when he hits me, only when he plays with me. Now you'll talk about something?"
OK! Let's about Max. Max needed to get a special test to make sure his brain is OK.
Sabrina: "I'm going to spell something on the computer."

safdaccvafap[popopablclws;dkdldllddwdyiiitt w we1te1tqhhekj4e

And that was that. The EEG stays on till Friday morning, then we have our appointment with the neurologist the following Friday.

Tests like this mildly unnerve me because I don't want to hear crappy news about Max's brain. When Max was a baby, our neurologist told us to look at what he was doing and not get disheartened by the brain damage in the MRI photos taken the week he was born. MRI film may look grim but it doesn't tell what a child's capabilities are—and how he can overcome the damage. Dave and I have stuck with that advice since. Dave actually found an amazing story yesterday on CNN about a woman named Michelle Mack in Falls Church, Virginia, who was born with half a brain. She has some challenges but basically talks normally, graduated high school and lives a full life. Get this: The right side of her brain rewired itself to take over functions controlled by the left, damaged side. Wow. Just, wow.

And so, the scary MRI film sits way in the back of a closet, a monster in the closet that we never let out. Of course, if Max is having any sort of seizures, we do need to know. They'll be controllable by switching medication, if worst comes to worst; the one he's on now doesn't help with absence seizures.

Now, more rock-the-vote requests: Mutual of Omaha did a tour this summer and recorded people's "aha" moments. They got 1000 stories, narrowed them down to 75 and they're picking a Top 10 based on votes. Included in those videos is Barry, who talks movingly about having a son with Down Syndrome. Voting's open till tonight to 12 a.m. Pacific Time, so jump in!

Wednesday, October 14, 2009

Max and I are going to be rich and famous!

Oh, OK, so maybe we might just win a contest. I'm a finalist for The Bump Mommy Blog Awards in the "Hottest Mom" category.

Oh, OK, it's the "Special Needs Blog" category. And the competition is fierce; all of the blogs are worthy of recognition. As the saying goes, it's an honor to be nominated. I actually welled up. This is also a welcome distraction from what's sure to be a minor medical drama tomorrow, when Max goes for his ambulatory EEG to check whether he's having absence seizures.

Shameless plug alert, click to vote for me! Just scroll down to the bottom of the page. Voting ends October 19, and I'm pretty sure you can do it as often as you'd like.

Mom, you're going to vote for me, right?

Illustration by Rozana

Tuesday, October 13, 2009

Yet another "aha!" moment about raising a kid with disabilities

Riding the train home from work tonight, I bumped into a woman I know from my city. Her twins were born the same year Max was. I asked how they were doing.

"They're in first grade—it's so hard to believe!" she said.

It hit me then: This would have been Max's first year in elementary school, too. Incredibly enough, that hadn't even occurred to me when September rolled around. I was just excited for Max to go back to the school for kids with special needs that he's in, one that doesn't have grades, per se.

I didn't think "If Max hadn't had that stroke, he would have been in first grade now."

I did not compare him to typically-developing kids.

I did not mourn.

I just took Max's life as it is. And that's a momentous thing.

My mind long ago accepted that I have a child with special needs; I got Max into our state's Early Intervention program when he was a month old, and I've been paving the way for him ever since. It's taken my heart a much longer time to accept those special needs and to cherish Max for the child he is, not the child he could have been. But it's happening. It's really, really happening.

Monday, October 12, 2009


This week's theme at I Heart Faces is "excited." I thought I owed it to Sabrina, who sometimes feels like Max gets an overabundance of attention, to put up this photo from our Disney Cruise.

Max and the amazing, awesome, no bad, very good day

Max's entire school was invited to a local farm for Saturday fun. Dave took Sabrina to swim class, so I had Max all to myself. There was a big white tent set up with hot cider, hot dogs and donuts; an outdoor fireplace for toasting marshmallows; a big blow-up slide; pony rides; clowns; face-painting; pumpkin picking; you name it.

Doesn't Max sort of look like the Marlboro Man?

Max did a good job of balancing, but he also loved falling down.

He kept asking for more once the ride was over.

He was a little afraid of the hayride, so this nice guy named Victor drove us to the pumpkin field in his pickup truck.

Max charmed Maryann the clown.

Max was quite the social butterfly, going up to all the kids he recognized from school, pointing them to the pony ride, kicking balls around with them. Hmmm....good looks, charming, likes to mingle—maybe he's destined to be a politician.

Eternal thanks to John and his lovely family for hosting all of us. It was a day we'll never forget.

What sort of fun fall stuff have you been doing with your kids?

Saturday, October 10, 2009

Little House on the Prairie lives on!

In case you've ever suspected I'm a dork, this post will pretty much confirm it.

Little House On The Prairie: The Musical is playing at a local theater, and I got tickets for me and Dave (there's no way Sabrina, let alone Max, would have ever sat through that). Guess who played Ma? Ding ding ding! Melissa Gilbert.

When I was around 12, I was a crazy reader. I'd burn through ten books a week from the library. My favorites of all time were the Little House on the Prairie series, The Great Brain series, Encyclopedia Brown books, and anything by Judy Blume. Oh, wait, I also liked Ellen Raskin's books, Beverly Cleary's, M.E. Kerr's, E.L. Konigsburg's and Paula The Cate Ate My Gymsuit Danziger's.

I also, of course, loved the Little House series on TV. I fancied myself to be a bit like Laura, but without the prairie or those crazy-ass hats. I was fiesty. I had brown hair and brown eyes. I was a Daddy's Girl. I had freckles.

The show tonight was kind of cheesy, but sweet in a sentimental sort of way. I think I would have liked it much better if it weren't a musical, I have a low tolerance for them. Melissa Gilbert did a nice job as Ma; she even sang. I actually liked Nellie better than I liked Laura (scarily, Nellie reminded me of Sabrina). I cried when Mary went blind from scarlet fever. Dave fell asleep and snored.

What were your favorite books when you were young?

Friday, October 9, 2009

Thinking about the future—and trying not to

Welcome back to the blog with multiple personality disorder! Yesterday, I mused about barf. Today, I'm pondering Max's future.

I just read an article about a father with a twentysomething son who has autism. The dad decided to start a business called Men With Mops, a cleaning and odd-jobs service staffed with autistic adults who attend a center with his son. Staffers make $7.25 an hour wiping down bathrooms, doing yardwork and running errands for local homes and businesses.

I thought it was amazing that this man had helped find work for these men.

I was haunted by a comment a client made in the piece. "They're diligent in their dusting," the woman gushed.

Diligent in their dusting.
Diligent in their dusting.
Diligent in their dusting.

Is this what adulthood might hold for Max? He'll be a diligent duster?

Thinking like this does me no good—that, I know. Max is also just six. Yes, he has big challenges and obstacles to overcome, but he has time.

Sometimes, though, I just can't help having a little freakout about his future.

Photo by Ms Ladyred

Thursday, October 8, 2009

Is that SNOT in your hair?

I'm hanging out with Max in the playroom. Suddenly, I spot something in his hair. It seems to be a big booger. Oh. It is a big booger. Max isn't very adept with his hands, so I have to help.

Whose booger is that?

How exactly did it get in Max's hair?

I ponder this as I pluck out the stuff, wipe my hand on a paper towel then go wash up.

It's disgusting. And I am totally desensitized to it.

After years of changing Max's diapers (he's still not potty trained, though I'm hopeful) and dealing with Sabrina's refusal to clean herself after she poops, along with runny noses, bloody knees, throw up (on the floor, on me), ear wax buildup, assorted bed pee accidents and lots and lots of drool, pretty much nothing grosses me out. Well, except Dave's toenails.

Go on, try to disgust me with some gross story about your kid. Just try!

Artistic rendering of slime by Jason

Wednesday, October 7, 2009

10 things I could have never, ever imagined about having a kid with special needs

10. First off: I never imagined I would have a kid with special needs. I wasn't one of those overly concerned pregnant women. I always assumed (how could I have been so presumptuous?) that my baby would be born like any other healthy baby.

9. I never imagined I could be a strong as I am. I mean, I was never a pansy. But I have been determined, durable and Energizer-bunny-like beyond anything I thought possible.

8. I never imagined the grief over having a kid with special needs would subside—especially during the early years, when everything was so ominous and scary and terrifying. But the grief has subsided. Or, rather, it has retreated to a place where it doesn't rear its head all that often.

7. I never imagined that my child would be doing as well as he is. When doctors say that your baby may never walk or talk and could have severe cognitive deficits, it is hard to wipe their words from your psyche and soul, even as you do everything possible within your powers to make your child succeed, cheer him on and hope, hope, hope.

6. I never imagined what an incredible father my husband would turn out to be. You always figure the man you love would make a great dad, more or less. But he is the most hands-on, hardworking, caring, concerned, hug-giving father of any dad I know.

5. I never imagined the incredible help and support I would get—from family, friends, teachers, therapists, doctors, the insurance company (well, on occasion) and other parents of kids with special needs. Especially all of you. It's easy to feel alone when you have a kid with special needs.

4. I never imagined how absolutely wanted a child with special needs could be. Is that terrible to say? Until you have a child with special needs, it's easy to look upon them as a burden. I used to pity the moms at the mall or in the park who had a kid with disabilities. Now I'm that mom. And I am so not someone to pity. Neither is my son.

3. I never imagined the fun I could have with a child with special needs. Every-kid fun, like playing baseball, going to amusement parks, crashing toy trucks, rocking out to kiddie tunes, pretending to be a scary monster, giggling over total silliness.

2. I never imagined the ebullience you experience when your child with special needs does something for the first time.

1. I never imagined I'd look at my child with special needs and not see the special needs. But today, I look at my child and all I see is an amazing kid.

Tuesday, October 6, 2009

I confess: I'm a blogger who's accepted a major gift

There's news today about guidelines issued by the Federal Trade Commission that stipulate bloggers have to disclose gifts—products or money—they get in exchange for writing reviews.

So, I guess I have to legally owe up to a gift I received, one that I write about daily. A gift I wasn't expecting, but one that makes me feel great day in and day out. A gift that pays off serious dividends in happiness. A gift that doesn't necessarily make me look any younger or prettier, but works wonders for my soul. A gift that didn't come with an instruction manual, but I've pretty much been able to figure out as I go along. A gift that enables me to blog daily. A gift that's priceless.

It's Max. Yes, my beautiful little boy with cerebral palsy is a gift.

OK, Federal Trade Commission, I've come clean.

Photo by Passitonplates

Kids with special needs and their (obnoxious) siblings

Sabrina is going through some sort of phase. The symptoms are:
• She only wants hard-boiled eggs for breakfast
• She's obsessed with iCarly
• She refuses to wear tights or socks
• She's been requesting "vegetable sandwiches" consisting of bread, lettuce and shredded carrots (yes, I realize this is a Good Thing)
• She has been particularly obnoxious to Max. Like, last night I was putting her and Max to sleep, and she begged for some cheese. I gave it to her, and made her eat it outside the bedroom (where Max was nodding off). Suddenly, she said, loudly, "Mmmmmm, Maaaa-aaaax, I'm eating chocolate ice-cream."

What's up with that torture?

The worst was over the weekend, when she started imitating the way Max talks. We were in the car, Max said "Noooooo" to something and Sabrina piped up with this pitch-perfect "Nooooooo." Then Max said "EEEASH OUSE!" (translation: "Beach house," that place he's obsessed with.) And Sabrina said, "EEEASH OUSE!"

Max started giggling. Dave and I were on the verge of laughing, but we stifled it. I mean, it wasn't funny. But it sort of was funny. I pulled myself together and told Sabrina she was being rude, and that even though Max doesn't talk the way she does, he is still talking. And that she wouldn't like it if someone did that to her.

Tomorrow, I am programming Max's speech device with three new words: "CUT IT OUT!"

Monday, October 5, 2009

Max, the movie star!

It's getting kind of hard to tell Max and Brad Pitt apart, don't you think? OK, OK, so Max is not going to Hollywood anytime soon, but this was quite the I'm-ready-for-my-closeup weekend

When we were at Duke University for Max's stem cell infusion, a TV crew showed up with the doctor; they were doing a story on Dr. Kurtzberg, and wanted to videotape an infusion. I said yes. It's a TV production company specializing in medical news that creates segments and distributes them to stations across the country. They wanted to get some footage of Max at home, so they came over on Saturday, and Max totally played to the camera. They did an interview with Dave and me, too, and of course I got all teary-eyed. Dave and I did fine, though we had opposite takes on whether Max had shown any improvement from the stem cell infusion. I said I didn't think so (Dr. Kurtzberg said if anything happened, it would take about six months); Dave said he thinks that Max is more alert. That's our typical pattern—I'm pragmatic, Dave is overly optimistic. We balance each other out. I'll put up a link to the segment when it's done.

On Sunday, we got a visit from a photographer, Peter Miller, who works for The Littlest Heroes Project; it's a group of photographers from around the country who volunteer to take photos of kids with disabilities/illness. I think they got too many applications and are currently out of commission—I can't link to their website. Peter was the nicest guy, he even showed up with presents for the kids. He spent close to two hours shooting Max, and Sabrina too. He got some great shots, even a rare one of Max and Sabrina together. She went the diva route; I had to promise I'd take her to the store and buy some pickles (she's crazy for them) just to get her to smile for the camera.

In other exciting news, this weekend I finally organized the house a bit. Organizing is, for me, as good as therapy. I purged our kitchen cabinets, tossing out stuff like pacifier holders (Sabrina's), various bottles of expired vitamins (why can't I commit to taking them?!), and old kiddie dishware. Such a mundane activity, I know, but I felt a lot better with less stuff. We have too much damn stuff. It clutters up our living space, it clutters up my brain. God knows, my brain is pretty packed already.

Saturday, October 3, 2009

Outrage of the month

Dealing with The System is never fun, but (shocker!) it's even more maddening when you have a kid with special needs. I just heard about a five-year-old with ADHD in Queens, New York, whose bus ride to school was taking two hours to and from—even though he only lives 10 minutes away. Special ed advocates have reportedly been hearing a lot of similar horror stories this year. We haven't had it so bad, although our bus has a lot more kids on it and it's never on time.

Granted, the school says their buses for kids with special ed have been cut down from three to one. We'll all be dealing with the realities of our new economy in some way or the other. But surely, there is a way to arrange things so that a child who's already got mental challenges is not forced to be captive on a bus for four hours a day. And there was; the mom complained to the Department of Education, and they figured out a better route for him.

In these times, it's no longer OK to be mere champions for our kids—we need to be superheroes. We are not just the squeaky wheel that gets oiled—we are the VERY LOUD wheel. We are not just pushy—we are steamrollers.

Photo by Nikki.Jane

Friday, October 2, 2009

Stuff that drives ya nuts

Mostly, I feel very, very lucky that Max is who he is. Given the terrifying stuff we heard when he was born about the risks he faced. Given the fact that he is bright, determined and very adorable. And he has good hair.

Sometimes, though, he drives me slightly insane, not something I readily admit. It's one thing to laughingly gripe about Sabrina, a typically developing four-year-old with an underdeveloped sense of obedience and an overinflated sense of entitlement to anything with a Disney princess on it. It's another thing to laughingly gripe about Max, a six-year-old with cerebral palsy and lots and lots of special needs. And so, I hardly ever go there.

But you know what? Max is, in ways, just like any other kid. I can't spend life feeling like I have to treat him differently or coddle him. Like Sabrina, some of the stuff he does is crazymaking. And so, without further ado, I hereby reveal: Lately he is making me a tiny bit nutso, and it's all because of chocolate ice-cream and a condo we visit at the beach near us.

Max loves this condo. No, make that, he's obsessed with it. And when he's obsessed with something, he brings it up approximately every three minutes. "EEAASH OUSE!" he says. The speech therapist had no clue what he was talking about this weekend, but I knew: "BEACH HOUSE!" We were going there on Saturday and Sunday. And he ate chocolate ice-cream in the beach house, and you know how loony tunes he is for chocolate ice-cream.

Which brings me to bedtime for the last few nights. I tuck Max in and turn off the lights. "EEEASH OUSE!" he says. "Yes, I know, you want to go back to the beach house," I say. "EYE HEEAM! EYE HEEAM!" Max insists. "Max wants chocolate ice-cream!" I acknowledge. "EYE HEEAM EEEASH OUSE!" he says, gleeful. "Max wants chocolate ice-cream at the beach house!" I say. "YESSSSSSSSS!" Max responds.

Now, it is miraculous to be having this chat with Max, a kid who was never supposed to talk at all. But the conversation loses some of its charm by the fifth time we go back and forth. By the TWELFTH time, I am walking backwards out the door chanting, "YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE! YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE! YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE!" and making a fast break for the living room.

Cut to morning. Repeat that scene all over again, only this time I am backing out the door to run for the train as I chant, "YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE! YOU'LL HAVE CHOCOLATE ICE-CREAM AT THE BEACH HOUSE!"

What drives you a wee bit nuts about your kids? Just a wee bit?

Thursday, October 1, 2009

Yet more swine flu vaccine news

Since I did my last post on the swine flu vaccine and kids with special needs, it's been on my mind all the time. Or, at least when I have time to actually think.

Last week, I asked our pediatrician whether he thought Max should get the vaccine. He left me a voicemail at work: "Yes, Max should get the swine flu vaccine, he's in the high-risk category."

Yesterday, I had a conversation with Max's neurologist. He explained that although having cerebral palsy puts Max in the high-risk category, that risk is mainly for anyone with cp who has breathing issues or compromised respiration—neither of which Max has. He acknowledged it was a tough choice, but said that he thinks the vaccine is too untested. And he said he wouldn't do it. Not for Sabrina, either. Or me or Dave. He did say I should tell Max's teachers that if anyone in his class gets it, they should let me know so I can keep him home.

I've been reading up on the swine flu vaccine debacle back in the '70s; cases of Guillain-Barre syndrome, a paralyzing nerve disease, were linked to it; Time had a good piece on it. I also read that The Obama administration is legally protecting anyone who distributes, prescribes or administers the H1N1 vaccine in an article by The Canadian Press (who's decided to shield drug companies from lawsuits).

As of tonight, I am leaning toward not getting Max the swine flu vaccine. And I am scared.

Photo by Feeling Croppy

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