Friday, February 27, 2009

Crazy news: mother caught driving and breastfeeding

Today, a Dayton, Ohio woman was pulled over and given two citations for breastfeeding her daughter as she drove her other kids to school. Her response to the news: "If my child's hungry, I'm going to feed it." She noted that when she's driven long distances, she has pulled over to nurse.

Um, hello? It doesn't matter if you're just driving around the corner—NOT a good idea. The officers said her little girl's head was resting on the steering wheel. If this mother had gotten into an accident, that child could have been seriously injured. Or worse.

I'm all for breastfeeding, I did it myself. But this just makes my blood boil.

A public service announcement: Don't let your baby drink as you drive.



Photo by Jennifer L.

Thursday, February 26, 2009

Get excited—it's Primal Scream Friday



As that old biblical proverb goes, "It's my blog and I'll whine if I want to." Here it is, once again, a chance to vent about whatever's bugging you. Shouting encouraged! Permit me:

I AM SO OVER MY WINTER CLOTHES, MY WINTER SKIN AND MY LAME-ASS WINTER EXCUSES FOR NOT EXERCISING.

TWITTERING IS OUT OF CONTROL. WHY DO PEOPLE FEEL COMPELLED TO SHARE EARTH-SHATTERING UPDATES SUCH AS "I'VE GOT A BIG LOAD OF LAUNDRY TO DO"?

STIMULUS PACKAGE, TWO WORDS: HURRY. UP.

I AM TOO OLD TO TRY OUT FOR AMERICAN IDOL.

That is all.

Ballerina photos and a bedtime story about kids with special needs



When I got home from work today, there were a bunch of library books on the table, including this one, Ballerina Dreams. Life is so strange sometimes; remember a few weeks back I did a Q&A with a pediatric physical therapist who runs a dance program for kids with disabilities? Well, this is the book about her program. Sabrina had, coincidentally, found the book at the library when she was there with our babysitter, and decided to take it home.

I was so excited. We have yet to have a conversation about why Max is the way he is, and I thought this could be a good opportunity.

Max wasn't very interested in the book; he wanted to push a little toy caboose around the bed. So I started reading to Sabrina, and got to a photo of a little girl with braces on her legs.

Me: "See her feet? She has braces, to help her walk and dance. Max has braces, right?"

Sabrina: "I don't like braces."

Me: "Why not?"

Sabrina: "I just like to do ballet dancing. I think I want to do ballet again!"

[Background: Sabrina took ballet classes all of last year, then did nothing at the recital except stand onstage and peer serenely into the audience. The only time, and I mean the only time, she moved her feet was when she stepped forward at the end of the show to take a bow. Sabrina got the biggest round of applause of any kid.]

We continued, and I pointed out a shot of an assistant holding up a little girl.

Me: "See? This little girl is getting help standing up."

Sabrina: "Why does she need help?"

Me: "She has cerebral palsy."

Sabrina: "What is cepeeebral lobsy?"

Me: "It means that your brain got a boo-boo at birth and that your muscles don't work so well. Max has cerebral palsy."

Sabrina: "Oh."

And that was that. The book was just beautiful, as were all the little girls in it. At the end, Joann, the dynamo who runs the program, comes out and hands each girl a red rose. Here's the text:

"I am so proud of you all!" she says. Everyone has tears in their eyes. But they are not tears of sadness. They are tears of joy. The girls dreamed of being ballerinas, and they have made their dream come true.

I totally choked up. I felt like bawling, actually, but I got it together and finished the book.

Clearly, at 4, Sabrina is not quite ready to talk about Max. We will have that conversation, and many of them, in due time. For now, to her, Max is just the brother she loves.

Wednesday, February 25, 2009

What's black and white and cute all over?



Answer: Max, at 22 months old (don't ask me what happened to those curls, I have no idea, it's not like Max gets a daily blowout or anything). I put this photo up because I was inspired by the black and white theme at I Heart Faces, my new addiction.

Max's cuteness has come in handy over the years. Once, I was desperate to get an appointment with a developmental pediatrician, only he was booked solid for months. I got the e-mail of the social worker at the hospital where this doctor worked, then sent her a note about Max (he had a stroke at birth, he was at risk for Really Bad Things, yada, yada) and his photo, too. She called and got us in for a visit the same week. "How could I resist that face?" she said.

I am utterly shameless about Max's yumminess.

You can view photos from other parents who are shameless about their children's yumminess here:

Tuesday, February 24, 2009

Power to the Peeps


It is safe to say, I think, that parents of kids with special needs typically have much bigger issues on their mind than "I must get my child to try a Peep."

Not me.

Max has never had one. He's never really eaten much candy, in fact. He's not yet able to chew gummy or hard stuff, or bite into bars. It's one of those things that's always bummed me out; candy is such a quintessential childhood pleasure. True, Max has plenty of treats he enjoys—chocolate pudding, tapioca pudding, ice-cream, any type of birthday cake, hot and sour soup (seriously). But no Peeps.

I bought a package on Sunday (Peeps in the drugstore: the first true sign of spring) and I've had Peeps on the brain ever since. Last night I came home from work, so excited to show them to Max. I danced a yellow chick around on the kitchen table, broke off a tiny bit and popped the piece into Max's mouth, on his back molars so he could more easily chew it.

He loved it. "Mooooooore!" was the exact thing he said, in fact.

All is right in the world: My little boy loves sugary, cavity-inducing, no-nutritional-value-whatsoever Peeps.

Oh, shout out to my inspiring friend and dedicated commenter, Rich, for the article about him in his local paper. We have a celebrity in our midst!

Monday, February 23, 2009

Monday Morning Confessional: I used to make fun of a kid with handicaps



Over the weekend, my mom and I got to talking about the bungalow colony we used to go to. A bungalow colony, in case you've never heard of one, is a cluster of cottages, along with a clubhouse and a swimming pool, on a big plot of land. There used to be a ton of them in the Catskill Mountain Region of New York, and my family rented a cottage at one for the first 14 summers of my life. It's kind of like the setting of Dirty Dancing, but without anything dirty or much dancing (other than disco in the late 70s).

Anyway, my mother mentioned this kid, Adam, who'd occasionally come to visit his grandma at the bungalow colony. He had mental retardation. And suddenly, I had tears running down my face. I hadn't thought about Adam since I was little, but I realized, with horror, that I and some other kids used to call him retarded when our parents were out of earshot. "Retard! Retard!" we'd chant. Adam would whine "I am not a retard" and run to his grandma, who'd give us the evil eye.

Now that I have a child with mental retardation (who, unlike Adam, cannot even talk to defend himself), it pains me to think of how Adam felt when we teased him. It gets to me whenever kids say stuff about Max, even though Max doesn't notice. It's an issue that plagues many of us; Barbara at One Day a Time just did a thought-provoking post about this.

I've been haunted by Adam's face these last few days.

Adam is the only kid I knew, growing up, who had disabilities. It's weird, but when I've tried to remember how I used to react to kids with handicaps before I had Max—kids I may have seen out in the mall or elsewhere in public—nothing comes to mind. Nothing. Perhaps I've blocked out the memories because it's still hard to accept, on some level, that I now have a child with handicaps.

After Max was born, though, I developed an eagle eye for spotting children with special needs. I'd notice them everywhere, and wonder whether Max would turn out like them. I'd also notice the parents and assess how much sadness and weariness I could see in their faces. I don't do that anymore, but back then, I was always looking for signs of things to come.

What memories do you have of kids with disabilities and how you responded to them?


Photo by K. Guerrette

Sunday, February 22, 2009

News that'll make you smile


They're adding a building at the Dana-Farber Cancer Institute in Boston and every day, kids who come to the nearby clinic write their name on pieces of paper and tape them to the windows for the ironworkers to see. The workers then spray-paint the kids' names onto the building's beams. How great is that?

Saturday, February 21, 2009

Welcome to the Oscar Awards!



Oh, alright, it's not the Oscars, but it's a heck of a lot more meaningful. And I did put on my red sequined gown to write this.

Thanks to Ally from Ally in Wonderland for the Lemonade Award. In the immortal words of Sally Field: "You like me! Right now, you like me!" I hereby bequeath this to the following bloggers, who have an amazingly optimistic attitude and a whole lot of spirit:

* Lisa (and Andy!) over at Elijahland
* Jess at Connor's Song
* Sarah and her mom at Class of 2008
* Debbie at Amazing Amelia
* Katy over at Bird on the Street
* Angi at Elizabeth Ann
* Michelle at Big Blueberry Eyes


Thanks, too, to a new friend, Keri, over at Life of Logan for giving me the Noblesse award, which she says is presented to bloggers who display consistency in any one or a combination of these conditions:
1. The blogger manifests exemplary attitude, respecting the nuances that pervades amongst different cultures and beliefs.
2. The blog contents inspire; strives to encourage and offers solutions.
3. There is a clear purpose at the blog; one that fosters a better understanding on social, political, economic, the arts, culture and sciences and beliefs.
4. The blog is refreshing and creative.
5. The blogger promotes friendship and positive thinking.

I am supposed to write a little bit about the purpose of my blog before I pass the award along, so here goes:

I started this blog to connect with other parents, especially ones who have kids with special needs. I wanted to relate (having a child with disabilities can feel so lonely), share experiences, trade advice. I also wanted to encourage parents with very young kids, as I went through hell during the first couple of years of Max's life and there was a lot of stuff I wish I'd known then (I once did a post about that). Oh, and I wanted to laugh. Lots.

And now (envelope, please), the award goes to...

* Marcela at Pray for Nathan Dorje. She's been on amazing journey of self-discovery, and has been great about sharing what she's learned.
* Attila the Mom at Cheaper Than Therapy. Outspoken and hysterically funny (as if you couldn't tell by her name).

Last, my friend Lyla over at Globetrotting Bride gave me the Picture Tag Award. Instructions are:
1) Go to your pictures on your computer
2) Go to your 6th folder
3) Choose the 6th picture in that folder and post it, with an explanation

Lisa at It's The Little Things, tag, you're it!

Here's my photo, taken Dec 21, 2004. Max, who had just turned two, had just started crawling around on all fours and we were so thrilled.


BTW, if you don't care to pass along the award or don't have time or both, no worries. I am not a believer in bad karma. Those chain e-mails always end with me. :)

Friday, February 20, 2009

Yipppeee! It's Primal Scream Friday



Complaining's an underrated pleasure, isn't it? Join the fun! Note, I fully encourage the use of capitals, it's ever so much more satisfying. Here goes:

I JUST READ A PREDICTION THAT THE RECESSION WILL LAST TILL APRIL OF 2010—AND THAT'S THE BEST-CASE SCENARIO. CRAP.

INSURANCE COMPANY, NOT ONLY ARE YOU TELLING ME THAT YOU WILL NO LONGER PAY FOR MAX'S THERAPY BILLS, BUT YOU ARE SAYING THAT YOU HAVE NOT RECEIVED BILLS THAT I SENT TO YOU (YOU KNOW, THE ONES THAT YOU DO NOT WANT TO PAY). INSURANCE COMPANY, THERE IS A SPECIAL PLACE IN HELL FOR YOU AND WHEN YOU GET THERE AND BEG FOR A DRINK OF WATER YOU WILL BE TOLD, "SORRY, YOUR PLAN DOESN'T COVER THAT."

CHILDREN, WHY MUST YOU KEEP SLEEPING IN OUR BED? WHY DO I KEEP I LETTING YOU? WHY AM I SHOUTING AT MYSELF?

A POOL OF WATER KEEPS FORMING AT THE BOTTOM OF MY DISHWASHER WHEN IT'S NOT EVEN IN USE. MY PLAN IS TO KEEP PRETENDING THIS IS NOT HAPPENING, AS THERE ARE APPROXIMATELY 459 THINGS I WOULD RATHER SPEND MONEY ON THAN DISHWASHER REPAIR.

CHEETOS, THERE IS A SPECIAL PLACE IN HELL FOR YOU, TOO.

That is all.

Photo by Gregory Pleau

Thursday, February 19, 2009

Divorce shocker: imagine raising a child with special needs by yourself



Yesterday morning, I bumped into a woman I know at a neighborhood coffee shop. She has a little girl Max's age who also has special needs, and they used to be in school together. "I'm getting a divorce," she told me.

My jaw dropped. I mean, I had always thought they were a bit of an odd match—she is super-bubbly, charming and full of life while he is quiet and sometimes sullen—but hey, who was I to judge. What floored me most was the thought of her raising her little girl by herself.

If anyone reading this is a single parent, well, I am in awe of you. I need, really need, Dave around to help with Max. Although Dave doesn't like putting on the kids' clothes and could take or leave bathtime, he's always there to help feed Max. In fact, it's usually Dave who does it (we're still working on the self-feeding thing). Max has always had trouble eating—his tongue and chewing are uncoordinated—and when he was a toddler, feeding him upset me. Eating seemed like such a basic skill; how could my child not be able to handle it? Was he that challenged? It was classic I-have-a-kid-with-disabilities denial. Since mealtime didn't make Dave mental, he often fed Max and the habit stuck.

Dave isn't just there to take care of the kids, he's there to take care of me. He'll whack me upside my little head (OK, not literally) when I go on a worry streak and tell me that things will be OK and even if they aren't, we'll deal with them together. He's sweet, as you know, and he's so very sane. His hugs are the best therapy there is.

All of this was going through my head on the train ride to work. Can you even imagine raising your kids alone? (And we'll just forget about those times when you feel like killing your husband because, say, he has left the garbage out on the back porch and the vagabond neighborhood cat ripped the bag apart and scattered trash everywhere.)


Photo by V. Mason

Wednesday, February 18, 2009

The best places for online shopping deals (for kids and adults, too)



OK, I'm going to go out on a limb here and assume that, like me, you love a bargain. (Unless you are Paris Hilton, in which case, wow! Paris Hilton reads my blog!) So I'll show you mine if you show me yours.

This post is partly inspired by a wonderful writer I've connected with, Kim Richardson, who has found all sorts of treasures over at—didn't even know it existed online!—Goodwill.com. Kim has a book coming out in April, The Unbreakable Child. I haven't yet read it, but it sounds intense and brave and bold and I am sure it is full of the spirit that infuses her blog.

BTW, the white-gold-and-diamond mouse above usually goes for $23,250, but I found it online for $16,051.99. Just look at the deals you can snag during a recession!

KidSurplus: Name-brand clothes, toys, baby stuff, you name it, at excellent prices.

Half: I've found new and used books at major discounts.

Smart Bargains: A somewhat smaller version of Overstock.com, it also stocks basically everything from clothes to jewelry to electoronics, but I think you can find even sweeter deals here.

My favorite sites for finding online discount codes are RetailMeNot, Wow-Coupons and CurrentCodes.

Now, to offset the materialism radiating from your screen, here are some of my favorite do-gooder sites:

New Eyes for The Needy: Donate old eyeglasses to people who could use them.

Cell Phones for Soldiers: Donate your old phone and it's turned into a prepaid phone card for a soldier.

The Breast Cancer Site: Click once a day to give a free mammogram to a woman, paid for by sponsors.

Now, spread the love and share your favorite site for deals and doing good.

Tuesday, February 17, 2009

Raising a child with special needs: a photo essay


It's hardest when they are very little. You assess their every movement, their every look. Is this normal? Is that? You fear what the future might hold. You wonder why it happened. Why.


As they get bigger, so do their personalities. And boy, can they have big personalities. So much bigger than their disabilities.


Sometimes, they have sisters or brothers to help. Or to fight. It's all good.


Sometimes, they figure stuff out by themselves. If they don't, maybe they will tomorrow, or the month after, or the year after. You learn that they are on their own timeline, and that is OK.


You still have moments when you worry that your child is staring out the window at the world as it passes him by.


But what lies ahead isn't as scary as it once was. You have a new sense of what "normal" means. You've found patience, strength, resilience and determination you never knew you had. And your love for your child? It is so much bigger than his disabilities.

Monday, February 16, 2009

Monday Morning Confessional: guilt and kids with special needs



Hope everyone reading this has the day off, it is such a welcome break. We're planning to visit yet another aquarium. Can you have an aquarium addiction? Forget the kids, I think I do.

We had a fun Saturday and Sunday. But, as happens sometimes, come Sunday night I had a nagging feeling that I hadn't done enough for Max. Did I use his Dynavox communication device ENOUGH? Did I play ENOUGH educational games with him and stimulate his brain ENOUGH? Did I get him to use his hands ENOUGH? And even, did I feed him ENOUGH? (He weighs 35 pounds; Sabrina is 45 pounds, per her four-year checkup last week, and the doctor told us to put her on skim milk.).

It's a theme I see running through many blogs about kids with special needs—the guilty feeling that you could always be doing something more for them. Parents in general feel that way these days, I think. It's why we sign the kids up for a kajillion activities. I know four-year-olds taking Japanese (not their parents' native tongue), computer classes, yoga. Sabrina goes to a gym class on Saturdays, and a preschool cooking class and science class during the weekdays. Max gets occupational, speech and physical therapy, at school and at home, along with music therapy. We also take him to a program for kids with special needs on Sunday morning, and I'm looking to find a sport he can play.

I tell myself that I'm doing the best that I can, but sometimes even that seems like not ENOUGH. You know?

Sunday, February 15, 2009

Hyperbaric oxygen treatment for children with cerebral palsy

I read a writeup about a study on hyperbaric oxygen treatment (HBOT) and its effect on gross motor skills at a blog I recently discovered, Therapies for Cerebral Palsy. Thanks, Andy, for bringing it to my attention. I googled around and found the study itself, in The Indian Journal of Occupational Therapy, because I wanted to read more about it. The study was originally reported in the Journal's April - July 2003 issue.

When Max was an infant and we were panicky about his future and desperate to try anything, we did HBOT for about half a year, starting when he was nine months old. We did a total of 40 sessions. The idea behind HBOT is, basically, that there may be areas of the brain surrounding the damaged areas that are dormant—and they have the possibility to be "woken up" and sparked into activity.

The kids in the India study were ages 2 to 5, and there were 30 of them divided into two groups of 15. One group got one hour of occupational therapy for six days a week for a period of six months. The other group, in addition to the OT, got HBOT for one hour a day for six days a week. At the end of the study, the kids who'd gotten HBOT had more improved gross-motor abilities than the group who did not get the oxygen therapy.

The study authors note that this is a very small study, and a larger study would be needed to make more concrete conclusions.

The benefits of HBOT on kids with cp are not clear-cut. I remember it being incredibly expensive (I've blocked out just how much so, but think around $150 a session, no insurance coverage, though prices vary and it's cheaper if you get one of those home oxygen tents). The treatment involved lying down with Max in this type of long glass tube that is not for anyone with claustrophobia (here's a photo of how the tube looks). Then the technician would infuse the tube with pure oxygen. We'd watch Baby Einstein videos to pass the time (but as I mentioned in another post, it's been proven that the videos are not necessarily good for kids).

I have no idea whether or not HBOT had any effect on Max. It's true that Max is doing so much better than the doctors at the NICU said he would—he walks really well, he can speak some words, he's bright. But, he's also had a lot of therapy, starting when he was one month old. And he's got determination (I like to think he inherited my stubborn streak).

Dave and I have always subscribed to the "If it can't hurt and might help, we'll try it" theory of therapy, so we bit the bullet and got it. And I would do it all over again.

What are your thoughts on oxygen therapy?

Saturday, February 14, 2009

Welcome to my Wordle



There's a site called Wordle that basically creates a "word cloud" of commonly used words in your recent posts. This is my Wordle (you can see it enlarged here). I love how "insurance" takes center stage (maybe that's an omen—I will convince them to pay for Max's therapy bills). I like that "cerebral" is separated from "palsy" (Max IS very cerebral!). And I am just generally amazed there are no typos (when I was tired the other night, I wrote a tag that said "cerebral palsy blob").

Happy Valentine's Day, all. Hope you're doing something fun. Dave's coming home late tonight from a business trip, so we're not going out (although we generally don't go out for Valentine's Day on principal, we can't stand the jacked-up prices). But he did send flowers to me at work on Friday, which was so amazingly sweet. That's Dave in a nutshell, amazingly sweet. Uh-oh—he's not in my Wordle.

Friday, February 13, 2009

It's Primal Scream Friday!



Here it is, back by popular demand. Shout out whatever's been bugging you. Me first:

I CANNOT BELIEVE THAT OUR INSURANCE COMPANY INFORMED ME YESTERDAY THAT THEY ARE NO LONGER PAYING CLAIMS FOR ANY OF MAX'S THERAPIES BECAUSE CEREBRAL PALSY IS A LIFELONG CONDITION AND THEY ONLY PAY FOR SHORT-TERM REHAB. INSURANCE COMPANY, SUCK IT. YOU CAN BET YOUR CORPORATE ASS I'LL BE FIGHTING YOU.

I MISS MY FRIENDS. WE'RE ALL SO BUSY KEEPING UP WITH LIFE THAT WE'VE HARDLY SEEN EACH OTHER LATELY.

I AM SO OVER TRYING TO ORGANIZE THE KIDS' TOYS. WHY DO I EVEN CARE? WHEN I AM 85-YEARS-OLD AND IN THE NURSING HOME, I WILL MOST CERTAINLY NOT SIT AROUND THINKING, "THANK GOD I FOUND EVERY SINGLE POLLY POCKETS PIECE, ESPECIALLY THAT MICROSCOPIC GREEN SHOE" AND "I AM SOOOO GLAD I KEPT ALL OF THE THOMAS THE TANK TRACK SET IN ONE PLACE." ORGANIZATION, SUCK IT.

OK, your turn!

Thursday, February 12, 2009

How to handle telemarketing calls: let your four-year-old talk



I am still so floored by the outpouring of comments on yesterday's post. Thanks again, all.

The following ROTFL incident happened last night, thought I'd share.

The phone rings; I notice it's a call from some random bank. Even though we put our name on the National Do Not Call Registry, we still sometimes have telemarketers hounding us. Sabrina is near the phone and picks it up. I figure, if someone's contacting us at 7:45 p.m., let them talk with her. This is what I hear:

"HELLLLLLOOOOO?"

"WHO IS THIS?!"

"WHAT DO YOU WANT? WHAT? WHAAAAAT?????"

"WHAT IS A BANK?"

"NO."

"I CAN'T HEEEEEEEEEAAR YOU!"

"MY MOMMY IS IN HER PAJAMAS AND WE'RE READING BOOKS."

"DO YOU LIKE PRINCESS ARIEL? SHE'S MY FAVORITE."

"BYE!"

From now on, Sabrina's handling all the telemarketing calls we get.

Wednesday, February 11, 2009

The responses people have to special-needs kids, continued



This post is brought to you by three cups of coffee (I am so wired-tired as I type this) and residual agita over something that happened at the aquarium this weekend. There we were standing in front of the tank with the hippos, the four of us totally entertained by them, when I noticed a girl about five years old looking at Max. I glanced at him; he was drooling. "EWWWWWWWW," she said, then darted away before I could respond or pull her ponytail (OK, I wouldn't actually).

Max didn't notice. Dave didn't, either. It's always me who does, I guess because I always have my antennae up for it.

I've blogged before about the stuff kids say about special-needs kids, how kids who stare or glare or make comments get to me. I know some of you feel the same.

The all-time most mind-boggling thing anyone has ever said about Max is this. I was having a discussion with an older woman I know who has some pretty out-there ideas on health stuff. I mentioned that Max had a stroke at birth. "That happened because you ate too much tuna while you were pregnant, right?" she said.

I was dumbfounded. Completely, WTF dumbfounded. "No, that's not it," I said, slowly. "It was due to oxygen deprivation." And left it at that.

It's been six years since Max had his stroke. Clearly, it's going to take a lot more time for me to stop caring about reactions people have, insane or not. Maybe I always will care, I don't know.

Tuesday, February 10, 2009

Do they need a cut or what?



In case you haven't noticed from recent photos, my kids are vaguely starting to resemble Chewbacca. They are both overdue for haircuts.

For the first few years of Max's life, my mother-in-law did the job, and while I appreciate the fact that Grandma Tina wanted to help she tended to make Max look like a serial killer (picture the one Javier Bardem played in No Country For Old Men). Which I'm pretty sure is worse than looking like Chewbacca. Seriously, Max would end up with these lopsided, choppy, crazy-seeming bangs.

I started taking him to this kiddie salon by our house that is decked out with barber chairs shaped like cars. Alas, even the truck chair isn't enough to distract Max, he wigs out and bawls and fidgets on my lap as the haircutter tries to do her job.


Max "enjoying" his first professional cut. He did not get highlights.

Sabrina's hair takes forever to grow. We didn't even take her to the kiddie salon till this past summer.


She seemed rather dubious about the whole haircut thing.

So, I don't particularly enjoy taking them for haircuts, because they most definitely don't enjoy getting them. Maybe I should just stick with Grandma Tina. That serial-killer style isn't so bad, is it?

7 Questions For...a pediatric physical therapist who runs Dancing Dreams


Watch CBS Videos Online

Joann Ferrera is a physical therapist who runs a program in Bayside, New York, called Dancing Dreams. It's just for kids with physical challenges; many of her students, who range in age from 3 to 16, have cerebral palsy. I am amazed by her; you can't watch this video and not tear up. She recently answered a few questions for me.

So, what made you start Dancing Dreams?
I am a pediatric physical therapist. During PT sessions some patients would dress up and we'd pretend-play. One day a little girl who had on a tutu said to me, "I wish I could be a ballerina like my friends." That made me think, why not?

Can you explain how dancing can be therapeutic to kids with physical challenges?
Any movement is therapeutic. We have seen improvements in balance and movement. It never ceases to amaze me to watch the dancers on stage and the pride they have in their individual accomplishments, be it raising an arm or taking a step. One of our dancers stood independently for the first time during our recital.

How can kids who don't walk participate in dancing?
Our dancers are each paired with a helper, a trained high-school student, to assist during class. Some dancers are in wheelchairs and they move within and with their chair. Some stand with support for some dances and sit for others.

How can a parent do dance therapy at home?
Music is a great motivator! Don't try to be too structured—allow your child to interpret the music and move in whatever way they choose. We use lots of props—scarves, wands and tutus are great! Just remember, keep it fun. It isn't about quality, it's about moving. I find that in general, when kids start to move they will be motivated to work on what they need to, and accomplish what they want to.

What kind of music is good to play?
I use a wide variety, from the "Hokey Pokey" for the youngest group to "Celebration" to "Rock Around The Clock" as well as traditional ballet music. I have a Laura Hausman ballet music CD that I like but I really vary the music—I find that different children respond better to different music. I also like to vary the music as the slower songs are better for controlled movements—keeping the body still while just moving the arms—and the quicker good for quick balance adjustments.

Many people reading this will not have access to your program—do you know of any similar ones around the country?
As far as I know, this program is unique in the set up and the fact that I am a physical therapist. We have recently become a nonprofit and hope to bring the program to more cities in the near future.

What's your absolute best advice for parents of children with special needs?
Every child is unique. Find your child's passion and embrace it whatever it is. From my thirty years of experience as a therapist, I can tell you that is the key to motivation. Find team members who support your child's (and your) goals and who are receptive to your needs. Don't be afraid to question—but take the time to listen to the answers.

For info about the upcoming recital in April (admission is free), visit Dancing Dreams.

Monday, February 9, 2009

Monday Morning Confessional: So, this woman walks into her boss's office with spaghetti on her shirt...



That's not the start of a bad joke. It's what happened to me the other day.

It was a particularly crazy morning at my house. I rarely leave myself enough time to get ready for work, so it's always this mad rush-rush-rush of plopping the kids down to watch Jack's Big Music Show, showering, indulging my brow-tweezing obsession for a few minutes (I'd probably stop to do that if I were running out of a house on fire), throwing on clothes and makeup, passing the kids over to the babysitter and zooming off to make my train. But that morning, I had a couple of bills to pay. I needed to put away some clean laundry the kids were somehow using as skates. And I never take time to eat at home but I was ravenous, so I grabbed a container of leftover spaghetti from the fridge and shoveled down a few forkfuls.

I walked into the office of one of my bosses shortly after I got to work.

"You have a noodle on your shirt," she said, matter-of-factly.

I looked down. There it was, a random piece of spaghetti hanging out on my chest. Not the entire loop of it, but a definite piece of one. I was about to make a joke about the spaghetti brooch I'd inherited from my grandmother but instead just muttered something about my busy morning (and, now that I'm pondering this, what DID I do with that noodle? Did I flick it onto her carpet? That's even less wise than walking around with a noodle on your shirt).

Curse you, Ronzoni.

I really need to wake up a little earlier.

Photo from istock/Kuricheva Ekaterina (surprise, that's actually not me)

Saturday, February 7, 2009

A day at Adventure Aquarium


Max and a new friend.


Sabrina thought it would be fun to get into the tank and go swimming with the sharks, but I pointed out that she hadn't brought her bathing suit.


Max's favorite tank of fish.


Can you spot Nemo 1 and Nemo 2?


Sabrina checking out the starfish


Jellyfish rock


The penguin mafia


Quick—spot the hippo!


Is it just me, or did he smile for the camera?

Friday, February 6, 2009

Road trip!



After my Monday post about how having kids changes you, the reality that I'm not as spontaneous as I used to be has been bugging me. And so, we are going on a road trip tonight. We'll travel a few hours, stay at a Marriott using points Dave racked up on business trips then hit a major aquarium we've never visited before.

I know, we are so wild and crazy.

The kids are both into aquariums; Max stands there, mesmerized, in front of the fish tanks. One of his favorite things at Disneyworld was eating at the Coral Reef restaurant, which had a larger-than-life tank, and watching divers floating around it, feeding the fish and dolphins. Sabrina and I were both fascinated by a giant electric eel at a local aqarium this summer, the thing was like 10 feet long and downright evil-looking. Sabrina was especially excited to see Nemo in another tank.

Me, I could stand there all day watching jellyfish, it's like being high. And I think penguins are just about the most adorable creatures ever. And I like picking up the starfish and stuff in the interactive areas. And, uh, I think I may like aquariums even more than the kids.

What are some of your favorite places to go with the kids? Share!

Thursday, February 5, 2009

Let's have a little fun today!



You know, as opposed to all those other days when I depress you or numb your brain with blather about my children's hair looking like Chewbacca's or insult my mother-in-law or whatnot. I'm borrowing the following idea from Debbie over at Finding Normal, I love her voice and sense of humor. On Mondays she does something called "Monday Madness." My unbelievably unique take on it is to play the game...on a Thursday. Here's how it goes: I post a question, the first commenter answers it, then comes up with a NEW question. Second commenter answers that question, and comes up with a NEW question. Third person answers and comes up with a NEW question. And so on and so on. Shout out to all of you people who read my blog and never speak up, this here's your chance to do so—in ten words or less.

Sorry, I have no prizes to give away for originality or anything. Unless you'd like to win a mother-in-law.

Let's go! Snooze button or no snooze button?

Tuesday, February 3, 2009

Family sells everything they own: the costs of having a special-needs child



Interesting comments on yesterday's post. I realized, after reading what Torina wrote, that I neglected to talk about good changes I've experienced since having Max. That could be a whole other post, but let me just say that my level of patience has reached a new stratosphere, I have learned to appreciate little achievements in life rather than looking toward the big ones, and I have developed a deep appreciation of simple joys, like the grin on Max's face when he clomps around the house in his red Lightening McQueen boots.

So, I haven't been able to stop thinking about the Georgia family in the clip above since I read about them on Terri's Special Children Blog. The Peters have one child with autism and another who has Still's Disease. They are auctioning off everything they own on ebay to raise money to help their kids.

My heart hurt for them.

Brittiny Peters gets teary-eyed at the end but all in all, they seem amazingly clear-minded, even calm, about what they're doing.

Can you even imagine?

There have been times, mainly when Max was young, when Dave and I had to pay for a lot of his therapies and our bank accounts dipped low. We did some things with Max, like hyperbaric oxygen treatment and craniosacral therapy, that our insurance company wouldn't pay for but we said, screw it, we're trying it. Sometimes, they refused to pay us back even for standard occupational, physical or speech therapies. I've had to fight them a lot. Some battles I've won, some I've lost. We're doing OK. Back when Max was first born, my parents told us that if we ever needed financial help, they'd step in. We haven't had to ask, but it was comforting to know we had that cushion, just in case.

Some Mom bloggers welcome contributions. Melanie supplements the cost of ABR therapy for her son by making these adorable, hand-sewn crowns. I got ones for Max and Sabrina, and they are adorable. Photo coming soon!

How have you guys handled the financial needs of your kids? Does your insurance company reimburse for therapies? Any battle stories to share?

Monday, February 2, 2009

Monday Morning Confessional: How have you changed since having a kid?


In the hospital after Max was born, I had a conversation with Dr. Gloom one day (or was it Dr. Doom? I can't recall, they were interchangeable).

Me: "I still can't believe what we've been through. I feel like this is going to change my whole personality."
Dr. Gloom: "It will."

I've never forgotten that conversation. Clearly, when your child has a major stroke at birth, it's going to upend your existence. I really was a different person those first few months after Max's birth, a combination of postpartum depression and plain old depression. I was the mopiest mope who ever moped. But has my personality permanently changed? This being tax season and all, I've decided to take inventory of myself. Here goes:

Me, before Max:
* Bubbly, upbeat, loved to laugh
* Outgoing
* Determined
* Good advice-giver
* High-energy
* Worrier
* Loved to dance
* Hardly ever cried
* Incapable of going to sleep before midnight
* Spontaneous
* Liked to eat peanut butter out of the jar
* Generally enthusiastic about life

Me, after Max:
* More serious, but still plenty upbeat (and still laughing lots)
* Outgoing
* Determined (especially when it comes to doing stuff for Max)
* Good advice-giver
* High-energy (with a little help from iced coffee)
* Professional worrier
* Loves to dance (even if it's just to Laurie Berkner or Justin Roberts)
* Cries at times about what happened to Max
* Incapable of going to sleep before midnight
* Less spontaneous (though this is any parent, no?)
* Likes to eat peanut butter out of the jar
* Generally enthusiastic about life

Bottom line: I'm somewhat more serious now and more of a worrier (shocker!). And while I get bummed about what happened to Max, what I feel is an occasional pang of sadness, not the streaming current of despair that flowed through me throughout that first year of Max's life. I am basically still me. And my tombstone shall surely read, "Here lies Ellen and her jar of Skippy Super Chunk."

Care to share your own inventory?


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