Monday, February 28, 2011

On doing the good that you can do

Saturday night, Dave and I capped off our sushi date with a trip to the AT&T store, because we are nuts that way. Over dinner, I'd mentioned that I was thinking of giving up my BlackBerry, and he couldn't wait to check out iPhones. We bought one, and I'll be sending my BlackBerry to the Gift A Voice Project, which gives a voice to kids who are speech impaired via donated phones. A Facebook friend told me about it the day before.

It's just one small thing I can do, and I'm glad for it. I guilt myself out for not doing enough good in this world. I miss the weekly volunteer work I did in my twenties, before I had kids. I get so busy with Max stuff, general kid stuff and work that I don't have much free time to do local activities. And it bothers me. Charity may begin at home, but it shouldn't end there. Giving your husband foot rubs is not a humanitarian effort, even if he seems to think so.

This is why I was thrilled to be invited to a salon at Johnson & Johnson last week, along with 13 other bloggers, to talk about a few of the company's philanthropic programs and ways to use social media for social good. I ended up focusing on Text4Baby, through which moms-to-be can sign up for free reminders to improve their health and their baby's. I'm not sure how they knew that I am the biggest baby lover (although those posts about having a third kid might have given me away).

Text4Baby is geared toward low-income women, who typically lack Internet access and may have limited education and reading time. These women are more likely to not get medical care until their third trimester, or just completely go without it. Getting friendly reminders to not smoke or make sure their baby back-sleeps can make a significant difference in their lives and their children's; every year, about 28,000 children in this country die before their first birthday, and many more end up with major health problems because they were born prematurely or had a low birth weight.

If you tell a pregnant mom about this program, a mom who would benefit from it, it would be a simple way to do good, right? I'm hoping to. That's the way it goes—you want to help those in need in a big way, yet the reality is it happens one text, one gesture, and one donation at a time.

J&J didn't ask me to write any of this; I'm genuinely impressed by the programs they run that save lives, in this country and others. They are going to pay me a consulting fee for attending the salon, and I'm paying it forward: The money will go toward an iPad I'll give away here. I also got a $25 gift card that I spent at the company store, mostly on Johnson's Baby Shampoo; the kids have a lovely habit of dumping it out into the tub.

Have you done good lately that's made you feel good? I'd love to hear your ideas.

Saturday, February 26, 2011

Oprah Your Own Show: the winner who could change our kids' lives

Question: "What do you think is the biggest misconception about people with disabilities?"
Answer: "That they're helpless, and that their personalities are defined by their disabilities. I am so many things before I am a person in the wheelchair. Get to know the person, the chair is incidental."

That's Oprah asking the question. And that's Zach Anner, my American idol, giving her the most spot-on answer. He's one of two winners of the Your Own Show competition, and he'll be hosting his own TV travel show: Rollin' Around The World. Zach has cerebral palsy, and he has given me all sorts of inspiration for Max's future.

I've been at an event these last couple of days, and so I missed the big win last night. Here's the previous episode, where Zach and Oprah chatted. I found her treatment of him patronizing at times—that look of extreme concern on her face, that pat on the hand at the end. And the first question she asked ("What made you want to take this on?") threw me. Hel-lo, having your own TV show? Hel-lo, Oprah backing your own TV show?

Perhaps people will give Oprah props for his win. It's great that she gave all the contestants a chance at stardom, but she doesn't deserve special kudos for choosing Zach. He is genuinely funny and charismatic, and he deserved it. That said, this is groundbreaking, and I hope Zach's show will change a lot of misconceptions out there about people with disabilities—and the way our children are treated by society.

I suspect Max will be sending in his application next year for The Purple Show.

Stuff Worth Knowing About: 2/26 edition (now with more free iPads)

* Marissa's dad, Mike, is giving away five iPads to kids with special needs over at Marissa's Bunny. It's in celebration of the foundation he's launching to support kids with disabilities (his sweet girl, Marissa, has infantile spasms). Mike's boss is donating the iPads; he has also helped Mike raise money for surgery Marissa needs. The giveaway is merit based; Mike will review the emails and stories, narrow them down to ten and hand them off to his boss, who will pick five.

* You can get a free Disney memories calendar over at Snapfish. Just enter to win a five-day, four-night trip to either Disney World or Disneyland, plus a $200 Snapfish gift certificate. The first 100,000 peeps who enter get a redemption code to get a free Disney calendar from Snapfish, redeemable by February 28. They sent me a code to make one, and the kids were all, Woooooow, how did we get in a calendar? Now they think I have magic powers, as they should.

* Party at my friend Carissa's blog! In honor of her upcoming b-day and hitting 10,000 Twitter followers, she's giving away custom-fit jeans from, a NOOKcolor from Barnes & Noble, and an iPod shuffle over at Good N Crazy. She's also raising money for Juvenile Diabetes Research, and would appreciate a $1 donation.

* The site, where you can trade clothes, toys, your husband (OK, not him), recently launched Swap4Schools for donating books, DVDs, CDs, and other media to classrooms, who need stuff more than ever given the budget cuts.

* Have you shared a photo or a description of your breakfast...and gotten a free one for a kid in need? It only takes a minute.

That is all. Hope you have a good weekend and by that I mean, I hope you get to sleep late.

Friday, February 25, 2011

On convincing people that, yes, your kid with special needs is content

I'm on a train going home the other day and a guy sits down in the seat opposite me. We end up talking and it turns out we have a mutual friend. He asks where the kids go to school, and I tell him. He's never heard of Max's school, and I explain it's for kids with special needs.

"Can I ask what his disability is?" he says.

"He has cerebral palsy," I say.

"Ohhhh," he says. "That must be hard for him."

"Nope," I say, cheerfully. "He's a happy kid."

"How does it affect him?" he asks.

I explain that Max has issues with speech and using his hands, the simplified way I usually explain cp.

"Doesn't it bother him that he can't talk like other kids can?" the guy asks.

Wow. That's bold. "No, it doesn't—because he doesn't think he's different," I say. "He tries to talk in his own way, and he has an iPad with a communication app. He plays like other kids play. He laughs like other kids laugh. His cerebral palsy does not impair his ability to be a kid!"

And then I pull out a picture of Max with his gigantic grin and show it to the guy. "Does this kid look unhappy to you?" I ask.

"No," he says, and we move on to other topics, and I'm just a little flustered at having to explain, once again, that Max's special needs are not a tragedy.

It's not just strangers. I've had conversations along these lines with friends and family. Early on in Max's life, a very close family member once wondered out loud whether the reason Max smiled a lot was because he was simple-minded. It took a few therapy sessions to get past that one.

My child is happy with who he is.

I need the t-shirt.

Thursday, February 24, 2011

Special needs parenting: Sometimes, I think about normal

We're in the car riding home from our trip to Philly, where we took a weirdly large number of pictures in front of a stuffed gorilla display. Playing on the DVD: Thomas the Tank, which has been on for an hour straight. Some might consider that a form of child abuse, but my kids can't get enough.

Suddenly Sabrina says, in an attempt at a British accent, "Thomas! You are late!"

Max, Dave and I crack up. She says it again, and then she's using that voice to say things like "Max likes purple!" and I am laughing so hard tears are coming out of my eyes and Max is hysterical with glee.

Then the kids get sucked back into the DVD, and it's quiet again. And I'm thinking, Oh. This is what it's like to be part of a normal family, everyone laughing together over a joke. This sort of thing is happening more now, as Max's comprehension grows, but it's still a relatively new phenomenon.

Yes, sometimes I still think about that normal, even though our family has its own normal. I don't feel  pangs of sadness, just a little wistful. And curious. Envious, even, at times. Like when we're in a restaurant and Dave is feeding Max and my eyes wander over to other tables where families are chatting and stuffing their faces, able to enjoy their dinner without the concern of making sure their 8-year-old gets fed.

I wonder about thinking about normal. Haven't I evolved past that? Shouldn't I be evolved past that? When will these thoughts stop?

Maybe they won't stop, and I need to let them just ebb and flow without getting too caught up in them.

Maybe it's normal for any parent to occasionally wonder about a different normal.

Life would be so much less perplexing if we were a family of stuffed gorillas.

Wednesday, February 23, 2011

Books for kids with special needs: what's encouraging Max to read

Choosing books for children with special needs can be tricky. I've found it hard to know what the right level of book is for Max—it can't be too wordy, but board books are too baby-ish. Lately he's into Thomas the Tank Engine, the reading of which makes me feel like banging my head against the wall. Supermarket sales circulars are more fascinating.

On occasion, I've been able to engage Max with Dr. Seuss books like Hop On Pop, because he's into rhymes. Then he started bringing home these 6-inch books from school. They're Sunshine Books, which come from Australia and are sold to schools across the world. The author, Joy Cowley, started writing in the mid-'60s, when one of her sons had difficulty learning to read. She has since written more than 600 titles. Whoa.

At bedtime, Max wanted Thomas the Tank, but I pulled out Up in a Tree and insisted. Max stared at the cover. "Up," he said, clearly. I pointed to the next word: "In," he said. And the next letter: "A" said Max. And the last word: "[Garbled something]," said Max. I made him repeat it; he has a heck of a time saying hard consonants like "t" and "c." But, indeed, he was saying "Tree."

Max had just read the title of the book. I was so ecstatic, I could have levitated off the bed. I gave him a big high five and boomed, "Great job reading, Max!" and he had the most gigantic grin on his face.

We read the book. The sentences are short, the words are in large type, repetitious and rhyming: "Up in a tree, what do I see? I see a bird, and it sees me. Up in a tree, what do I see? I see a dog, and it sees me. Up in a tree, what do I see? I see Mother...and she sees me." That's the entire book, quite the thriller.

Max identified the words "do," "see," "me" and "dog." Whoa.

I tell you this not just because I am ecstatic (which I am) or because I'm so proud of Max (well, yeah). I'm telling it to you because it's a lesson learned: Years ago, this was one of those things I wasn't sure would ever happen. Max? Reading?

YES, he is reading. YES, my boy will be a reader.

And once again I am pleased to say, to hell with you, doomsaying doctors who told me the worst and who made me doubt my child's capabilities. Max just keeps proving you wrong.

I'm writing the book on that one: Doctors Definitely Don't Know Everything About Your Child...And That's A GOOD Thing

I'm sure you know what I mean.

Which books interest your child lately?  

Tuesday, February 22, 2011

Road Trip: Philadelphia!

Road trip to Philadelphia? Bring it on! We're at the point where it's getting easier to travel with the kids, especially because Max is less fearful of new places. "IH OH-HEL" ("big hotel") are two of his favorite words. And so, we headed to Philly for the long weekend.

We were hosted by the Loews Philadelphia Hotel, located in the heart of the city in what used to be a bank. Built during the Great Depression, it's 36 stories tall and is considered the United States' first modern skyscraper. It's beautiful—and incredibly family-friendly, from the coloring books we received at check-in to the hospitality we got at the continental breakfast. Jonathan, the manager, pulled a table over to the TV when he saw that Max was getting antsy. He found him a coloring book, and tried in vain to locate some purple crayons as he was quickly made aware of Max's color preference. And then, he let Max borrow these:

Yep, "ur-ul" pillows.

The hotel is half a block away from the world's tastiest place, Reading Terminal Market, an indoor farmers' market with eighty-plus vendors selling food, flowers, and crafts.

This is Kauffman's Lancaster County Produce which sells jams, jellies, honey, and pickled everything. Also of note: whoopie pies from Beiler's Bakery; the pastrami sandwich at Hershel's East Side Deli; the roast beef, broccoli rabe and provolone hoagie from DeNic's; and Bassetts, where Max had three chocolate ice-creams in a row. Forget The City of Brotherly Love—this should be The City of Love Handles.

We developed an addiction to Old City Coffee, worth the ten-minute wait.

Sunday, we hit the Please Touch Museum, one of the country's best children's museums. It has six interactive zones in 38,000 square feet, all geared toward play and learning. There's a gigantic River Adventures water-play area (smocks provided), Flight Fantasy (where kids can experiment with balance, speed and gravity), replicas of stores where kids can shop, an Alice in Wonderland exhibit, and a beautiful carousel, among other wonders.

Max was out of his head with happiness—a car wash!

And a train!

And a gas pump!

I was extra-excited to be there because the museum is hosting a special exhibit, Access/ABILITY, through April 24. Its message: As human beings, we are more alike than different. Ironically or not, Max was too hesitant to roam through it because it was so crowded, but I took Sabrina. There was a wheelchair obstacle course, videos on how to do sign language, a place to type your name in Braille, art created by people with disabilities, and displays with protheses and other adaptive gear.

Sabrina gave the hand-pedaled bike a whirl and asked a lot of questions, and we got a good discussion going about disabilities. All around us, kids were asking their parents questions and absorbing, and it made me feel really, really good. This is one of the things I desperately want: for kids to understand what "disability" means and not be so fearful of children who have one.

A great sign, one of several: "We all learn in different ways. When it comes to learning, you may be good at some things, but not others. You may have a hard time reading, writing, or remembering, but be talented in other ways. You can use your strengths to overcome your learning weaknesses. Think about it!"

It was chilly in Philly, but we wandered around; this is the fountain in Rittenhouse Square. When William Penn helped plan and develop Philadelphia, he envisioned a "green countrie towne" with five public squares spread around the city; this is one of the original ones.

Washington Square is another one, which houses the Liberty Bell. Sabrina: "Look! Somebody broked it!"

That night, we had dinner at Jones, a hipster-diner sort of place. Dave got pistachio-crusted tilapia, I had tomato soup, Max did pasta and sauce and Sabrina got the best mac-and-cheese I have ever tasted, and I know because I kept stealing bites from her.

Monday, we hit the Academy of Natural Sciences, Philadelphia's Natural History Museum.

Max wouldn't go into the butterfly exhibit, but he was fascinated by the dinosaurs and dioramas featuring animals from North America, Asia and Africa. Word, be prepared to explain "dead person" if your 6-year-old sees a mummy.

We spent a lot of time at Outside In, a hands-on Nature Museum on the third floor. There were no turtles getting it on but there were bugs (Hissing Madagascar Cockroaches!), reptiles, a bunny, a sand pit and stuff to touch like animal horns and a real meteorite.

We spent a ridiculous amount of time cracking up over a special-effects movie where kids (and adults) could pretend to hang out with dinosaurs.

Then we got a flat tire going home, and Max was gleeful—I'm telling you, gleeful—about the bump-bump-bump of the car and the repair shop.

I have a bunch of discount coupons for Please Touch; email me if you're planning on going, and I can mail them to you.

Monday, February 21, 2011

The good you can do online today: Help feed kids in need

This is a picture of Max's breakfast today, in our room at the Loews Hotel in Philly (bad cabin fever = impromptu road trip). Not a remarkable breakfast, really (he has oatmeal every single day, and blueberry yogurt on occasion), except that I just posted it to Share Your Breakfast—and now, a kid in need will get a breakfast at school.

It's part of a program Kellogg's is doing with Action for Healthy Kids. The goal: to share a million breakfasts in the 2011-2012 school year. Each time you let them know what you or the kids downed for breakfast, Kellogg's donates the monetary equivalent of a school breakfast. The stats are sobering: One in four kids live in a household where food is hard to come by.

You can also type in a description of what you ate for breakfast—and if all you enter is "Coffee. Iced. Light." nobody will chide you for not eating breakfast, trust me on that. Or text a photo or description to 21534.

There's a virtual breakfast happening Tuesday March 1, from 11:30-12:00 a.m. ET on The Motherhood with Kellogg's (who sponsored this post). Dr. Reginald Washington, chair on the board of Action for Healthy Kids, will be talking about ending hunger in the United States. Everyone's welcome to listen in.

What did you have for breakfast? Please go share and snag a breakfast for a kid who needs one.

Friday, February 18, 2011

Max steps out of his comfort zone (and likes it)

This is Max's table setting. It's a perma-fixture on our kitchen table; he wants it there all the time. He keeps a matching purple bowl and plate on his bed. He sleeps with them at night, and makes sure they're aligned just so.

Max likes the familiar. A few weeks ago, we got a new phone and put the answering machine in our bedroom instead of the kitchen, where it had been for years. Max keeps asking us to bring it downstairs, where he feels it belongs. He also likes us to park in corner spots of lots. He likes to sit in corner tables at restaurants. No, actually, he only sits in corner tables at restaurants, and has been known to stare down diners who dare occupy his table. He waves his hand like a little Napoleon, ordering them to move. This is why we keep going to the same local diner on Sundays, where they save the table in the back for us.

Lately, though, Max is breaking out. This week, his school finally sent home the DVD of him at the holiday show I'd been begging to see; I'd missed it because of work and because every other year, he'd run out of the room screaming. Not this year; he beamed and sang "This Little Light of Mine," holding his mini flashlight. And then he took a bow. And I felt like the crappiest mother of the year for not being there.

Max is daring to try other new things, too. Last week, he asked us to move his chair (it's a Keekaroo) and his environmentally-incorrect tableware to a different spot at the table. He's been begging to go inside stores when we drive by, although they used to scare him. He sat at a new table at the restaurant over the weekend. It was a corner one, but still.

Clearly, the progress of our kids can't be measured by reports, charts or tests alone. It can't just be measured by an increasing number of spoken words or an improvement in movement. Progress comes in all shapes and forms—one song, one bow, one new place at a time.

Wednesday, February 16, 2011

Max's audition video for American Idol/Dancing With The Stars

I don't know where Max picked up these moves or what he's singing, but I love it. Oh, and remember how I once mentioned he has the most awesome way of saying "Yes"—it sounds like "Yeee-ah"? You can hear it here. I could listen to Max saying "Yeee-ah!" all day long. 

Tuesday, February 15, 2011

Experts for children with special needs: that would be us

Like me, I'm sure you have your own team of experts for children with special needs. Like me, I'm sure at this point you could qualify as an expert.

This is on my mind because today I read a fascinating New Yorker article, The Hot Spotters, that mentioned an inspiring doctor, Jeffrey Brenner, who works in an impoverished city in New Jersey. After he started reaching out to locals with the heaviest medical needs and giving them more personalized attention, he cut their hospital visits by 40 percent and their medical expenditures in half. I loved this quote:

"My philosophy about primary care is that the only person who has changed anyone's life is their mother. The reason is that she cares about them, and she says the same simple thing over and over and over."

It's so very true, especially when you're raising a kid with special needs—although obviously, there are plenty of caring dads out there, too. And to be sure, we have a veritable team of experts: assorted therapists, teachers, a pediatric neurologist, a developmental pediatrician, a physiatrist. But ultimately, Max's care boils down to me and Dave. Some days, the responsibility feels too great and I wish there were an actual expert overseeing Team Max. I want to make sure we're doing whatever possible to make Max's life better, easier, and more enjoyable. I want to make sure we're enabling him to get past his physical challenges and make his way in this world.

The other week, I realized we needed an adaptive handle for our phone so Max could better pick it up. Duh. The occupational therapist who sees Max at home hadn't thought to recommend it, and it had never before occurred to me, either. Max doesn't ask to make calls—but maybe he would if there were a phone he could more easily grab. The OT got the above handle and attached it the other day. So far, Max hasn't been dialing up girls, ordering things from infomercials, or prank calling, though I can just imagine that conversation:

Stranger: "Who is this?"
Max: "Ur-ul AX!" ["Purple MAX!"]
Stranger: "Huh? Who is this?"
Max: "Ur-ul AX!"
Stranger: "You have the wrong number!"
Max: "Ur-ul AX!"

I'm glad the phone handle occurred to me. I wonder what other stuff we're not thinking about that could help Max. But there's just me and Dave and Team Max, doing the best we can.

Explaining special needs to a sibling

The conversations have been happening at bedtime, when Sabrina tends to get chatty. Last night, she told me she saw a Friendship Circle sticker on a kid's car at school. It's a national group that offers programs for kids with special needs; Max goes to one on Sunday mornings.

I ask her if there were any kids with special needs in her school.

"No," she says.

"Well, sometimes you can't tell just by looking that a kid has special needs," I say.

"There's nobody like Max at my school," she says.

"Do you know the name of what Max has?" I ask. We've never used the words before; I've only told her that his brain got hurt at birth.

"No," Sabrina answers.

"It's called cerebral palsy," I say.

"How did he get it?" she asks.

"Well, something happened to his brain at birth," I say.

"What happened?" she asked. "How did it get hit?"

"Something happened to it on the inside," I say.

"Will Max always have it?" she asks.

I swallow hard. "Yes," I say.

"Even when he's ninety?" she asks.

"Yes," I say.

"I want to go to sleep now," she says. And we're done.

These conversations are happening more frequently now—only with me so far, not Dave. I'm finding them difficult. I feel no pain when I tell other people "He has cerebral palsy" or "He had a stroke at birth." I'm completely matter-of-fact about it. When Sabrina and I discuss it, the words get stuck in my throat. This is new to me, though; as we keep talking, I'm sure it will get everything has.

Monday, February 14, 2011

Valentine's recipe for time-crazed parents

Take one insanely busy Monday.

Add a heart-shaped pot someone gave you when you got married. Dust it off, as it hasn't been out of the cabinet for several years. Ponder how a lasagna is going to fit in there.

Spend 5 minutes sitting on the kitchen floor reminiscing about planning the wedding, when registering for things like pots and pans seemed like such a big deal.

Get sucked into the day.

Suddenly realize it is 4:00 and you are not sure you have ricotta cheese. Or, for that matter, lasagna noodles.

Add a dash of guilt: Isn't this how you were planning to show your family how much you care about them? A lasagna! Shaped like a HEART! Does it get any more meaningful than that?

Decide that a red, heart-shaped pot filled with tricolor pasta and sauce is plenty significant and it really is the thought that counts. Really.

Smile when family is impressed.

Serves four.

Sunday, February 13, 2011

Happy Valentine's Day: What have you done for you lately?

Good times: We had ourselves a Valentine's weekend.

Dave and the kids got me roses. Tomorrow, they'll get cards, candy hearts and heart-shaped lasagna.

Max made me a gigantic card (in purple, naturally). He wouldn't let me touch it.

We all went to a Valentine's Dance at Max's school where he ditched us; he only wanted to dance with his bff. In a tragic turn of events, Sabrina was introduced to the Macarena, and has been singing and dancing it ever since.

Saturday, we went to a children's museum. Sabrina made me do the Macarena in the bathroom.

Sunday, we went to a local gym that we're considering joining. It's a Lifetime gym, and it's exceptionally nice. Max was at his Sunday morning program, Sabrina and Dave hit the pool and I took a Zumba class.

I've had Zumba on the brain ever since I bumped into a little old lady at a coffee shop one Saturday morning, who told me she'd just come from a Zumba class. It's a Latin-inspired dance-fitness program.

I was all, if she can do it, I can...I think.

I figured if it felt more like dancing and less like working out, I might like it.

I loooooooved it. Let's just say I wasn't the smoothest with the moves (I'd definitely qualify for America's Funniest Videos), but I had an actual fun time and barely noticed that I was exercising. My left knee (the one with the partially-torn ACL that looks so sexy in x-rays) is a little sore. Other than that, I feel great.

The gym has a childcare center; when we went to check it out, a mom and her daughter were leaving. The girl was in a wheelchair. I told the mother we also had a kid with special needs and asked how attentive she felt they were to her daughter, and she only had good things to say. It was comforting to meet her—that whole sisterhood of the special needs child thing.

I am glad I finally got off my butt and made it to a gym. I'm going tomorrow, too. Valentine's is traditionally a time for showing other people how much you love them but today, I showed myself the love. I didn't give myself chocolates, though.

I hope you do something for YOU this Valentine's Day.


Thursday, February 10, 2011

One of the best things I've ever read

Our babysitter's daughter, a wonderful girl who's in high school, got an assignment to write an essay about someone who's beaten the odds. Guess who she wrote about? I was really touched. I know Max has overcome so much, but it's amazing to hear from a person who's known him all his life. 

This story is about a little boy by the name of Max. Max is now eight years old. However, even though he is only eight years old, I truly believe he has beaten the odds.

You see, when Max was born he was diagnosed with cerebral palsy. This affected many of his major bodily functions. All this required that Max get various forms of therapy such as occupational, physical and speech therapies. All the therapists worked dedicatedly with Max, and his parents and friends remained hopeful.

Through all the challenges in his various stages of development, we all watched Max slowly but triumphantly reach different milestones with the help of his dedicated therapists and a strong, optimistic group of family and friends. Though his therapy sessions at times required a lot of exertion on his part during his tender years, this little boy maintained his grace and pleasant personality, always smiling, jolly and just downright adoring. His pleasantness was so contagious one could never remain sullen around him.

Through the years, I've watched Max grow and improve in some areas that at one time some may have thought he would not. I always remained hopeful for him, especially because he is such a cutie with his trademark smile. Today I see Max walking without the aid of a walker, running, sitting without support and using his hands in a number of ways which really thrills me, especially when he strokes my cheeks and feeds himself.

When I look book at how he started out, in comparison to his achievements, to me Max has overcome many odds and has helped me to see that with the ideal support of parents, supportive family, dedicated therapist and loyal friends, my mom being the foremost among them going more than the extra mile in many ways, a person can triumph over some of life's most daunting challenges.

In Max I not only see a little boy, I also see a victor who will go on to overcome whatever challenges may lie ahead. He is a real trooper. 

Wednesday, February 9, 2011

When doctors tell you bad things...and they are WRONG. A cautionary tale.

I wasn't ever going to tell you this. I was kind of embarrassed. And scared. But I'm going to, because I think there's something to be learned from what happened to me today.

Back in December, I went for a much-needed physical. I hadn't gotten one in about three years. I kept delaying it because it was hard to find the time to go. Mostly, I didn't want to deal with the fact that I need to drop some pounds (the only scales we have at home are the ones on Puppy the Fish). When your kids are 8 and 6, you can't really call it baby weight. It's just plain old pudge. Actually, it's fat, but pudge is a nicer word.

I went to a doctor recommended by several moms in my neighborhood. I almost cancelled the appointment because of December insanity, but I forced myself to go. You know how kids get stickers at the doctors' office? I think they need to come up with incentives for adults to get check-ups. Like maybe a nice wine and cheese bar in the reception area. Or a free iPod at every check-up. Bring it on, health care reform!

The doctor and I talked. We agreed I needed to exercise more (I knew that was coming) and also down more veggies and fruit (I am way too carb-centric). She had a nurse draw blood for tests.

Cut to the Thursday before Christmas Eve. The phone rang at around 7. It was the doctor. "I got your blood test results, and I figured I'd call now while I had the time!" she said. Bah, humbug.

She proceeded to tell me that my blood sugar was 106. "That's a little on the high side," she intoned. "It's usually a sign someone is prediabetic."


I asked a rapid-fire bunch of questions: What can you do if you're prediabetic? Change your eating habits and exercise more. But can that head off diabetes? No, she said, "in my experience it can't, maybe for only five percent of patients." What does living with diabetes mean? Regularly checking your blood sugar levels. Maybe insulin injections. We agreed I'd do a follow-up visit in six months.

I came home and immediately hit I needed to understand more before I told Dave. Most terrifying sentence of all: "Recent research has shown that some long-term damage to the body, especially the heart and ciruclatory system, may already be occurring during prediabetes."

Dave was utterly freaked out. I vowed to reform my ways. Then we went on vacation, not exactly a great time to kick off a better eating regimen. In the last few weeks, though, I've been watching what I down and squeezing in as much walking as I can (the most realistic form of exercise for me right now). And regularly thinking, I'm going to get diabetes.

Today, I called the doctor's office to ask why I hadn't gotten copies of the blood test and the written letter I'd requested about her findings. And suddenly, it occurred to me that I'd better make sure the doctor knew I hadn't been fasting when I took the blood tests. Since nobody had called to tell me to fast before the appointment, I'd figured it wasn't required. Hmmm.

I got the doctor on the phone.

Me: "What we discussed about my being prediabetic has been on my mind a lot. I just wanted to verify that you knew I wasn't fasting when I took the blood test."

Doctor: "Let me check the chart."

Ten second pause.

Doctor: "No, it looks like I didn't know. Your sugar level is normal for someone who wasn't fasting."


Me, talking very slowly: "OK, just so I'm clear, I'm not showing any signs of diabetes?"

Doctor: "No. That sugar level is normal for someone who wasn't fasting."

She went on to apologize. Someone in her office should have called to tell me to fast. The nurse taking the blood should have asked if I'd fasted. She herself should have questioned me on it.

"I know this is your first time visiting, and I hope you don't get the wrong impression of my office," she said.

!!!!!!!!!!!!!!!!!!!!! And furthermore, !!!!!!!!!!!!!!!!!!!!!

But I was too relieved to get worked up over the mistake. I don't have prediabetes. I do still need to work on the healthier lifestyle thing. Maybe there's some cosmic reason I got this scare.

I'm telling you this because I think it's a reminder to question doctors' findings, whether it concerns you or your child. I'm all over that when it comes to Max. From his first days in the NICU, I have never taken doctors' words for granted. I have asked incessant questions. I have grilled them mercilessly. I have emailed, called, called again, researched things on my own, called yet again.

Clearly, I have to take better charge of my own health. Because I need to be around for my kids for a long, long time.


Tuesday, February 8, 2011

Mom job hazards that do not cause death (trust me on this)

• Running out of the house with sopping wet hair in the dead of winter.
• Being forced to repeatedly watch The Wiggles/SpongeBob SquarePants/iCarly/[insert your child's current TV obsession here].
• Also: reading the same book for 372 bedtimes.
• That rare moment when you are lying on the couch, relaxing, and....BOOM! Child jumps onto your ovaries.
• Subsisting on a diet known as Finishing Up What's On The Kids' Plates or its counterpart, Eating Extremely Old Goldfish I've Found In My Purse.

• Parent-teacher conferences.
• When your husband says, "Honey! Did you make any plans for us for the weekend?" and you feel a sudden tightness in your chest.
• Catching every single bug the kids bring home from school, even though they don't get them.
• Raffi.
• Extreme-poop diaper changes that make you feel as if you need an oxygen mask.
• An acute and incurable addiction to yoga pants.
• Sleep deprivation that lasts approximately nine years, or more.
• Pushing kids on the swings for what feels like hours. Isn't there an app for that?
• "MY MOMMY HAS BIG BOOBIES!!!!" Death by mortification = not possible.
• When your flailing, wailing, tantrum-having child accidentally conks you in the head or almost pokes one or both of your eyes out. Sure, you could try calling the malpractice lawyers, but you probably won't have a very good case against your five-year-old.
• Death by whining. Hmmm...might be possible.
• Airplane rides with the kids in tow (though may cause extreme anxiety).
• That moment when your child does something so amazingly cute, you feel as if your heart might explode.
• You tell me!

Monday, February 7, 2011

Potty training and special needs: S.O.S.

Last weekend, Max and I sat down at the computer and ordered a purple-covered notebook and purple smiley-face stickers. I needed a new way to motivate him to potty train. They arrived on Saturday.

Max immediately wanted to put one in the book. "Nope, you have to go on the potty," I said. So he grabbed my hand and off we went to the potty. He sat there for two minutes, then jumped up. Nothing. I gave him the sticker for trying. He got one other one this weekend and one today, also for the effort.

Things are not going wondrously well with potty training. It's been a four year on-and-off ordeal. Nothing has worked—not treats, not peer pressure ("Max, Caleb likes to go potty!"), not the ecstatic potty dance I've done on the few times he has deigned to go.

At school, he goes more often. He tends to be a lot more independent at school, as I've mentioned here. So we know the plumbing's working.

Even when Max finally starts going on a regular basis, there are logistics to be worked out of how he'll pull down his own pants and generally care for himself. His dexterity poses challenges.

I am getting a little despondent. Another mom I know, whose six-year-old has cerebral palsy and is in a wheelchair, would also like advice from other parents out there. Her child needs to be lifted onto the potty (and her mom has a weak back), and then has to be helped as well. This mom is worried about depriving her daughter of her dignity and pride. She's wondering whether she is setting herself up for failure since her child is in a wheelchair.

So, that's two of us who would really, really welcome your potty-training experiences and tips (and books, if there are good ones) for kids with special needs at a variety of ability levels. And, of course, your success stories.

Please, be potty-mouthed.

Sunday, February 6, 2011

Sabrina's 6th birthday party: "Awesome!"

Birthday Girl decided to dress for the occasion in her usual outfit of choice: one short sleeve t-shirt, one pair of Max's pants.

I was never able to do a split, so I guess there's a chance she's inherited my split-less-ness.

Max asked me to put these two together so he could do his version of the balance beam. Give that boy a 10!

I would have loved to know what they were plotting.

I think we need to get a big trampoline for the backyard. I'd definitely share it with the kids. Sometimes.

With her bff.

Me: "WOULD YOU PLEASE HOLD YOUR BROTHER'S HAND FOR 1 SECOND? PLEASE?" Smart-aleck kid in background: "One second is done!"


She loved the ice-cream cake, although we somehow managed to lose SpongeBob. Even more tragic: I didn't get a piece. Not fair!!!

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