Wednesday, September 30, 2009

Spreading the love



Emma from The Iron Chicken has given this award to me, and I'm proud. This blog is kind of like my third child, though having a human one still isn't out of the question and, wait, come to think of it, some days Dave is like my third child, so I guess this blog is like my fourth child. Got it?

I've passed this award on before; here are some more bloggers who, as The Lemonade Award demands, show "great attitude or gratitude." These are the rules, if you choose to follow them (trust me, neither I nor The Award Police will be keeping track):
- Put the Lemonade logo on your blog or within your post.
- Nominate at least 10 blogs with great attitude or gratitude.
- Link the nominees within your post.
- Let the nominees know they have received this award by commenting on their blog.
- Share the love and link to the person from whom you received this award.

Jess at Connor's Song
Cristin at Tiptoeing Through the Tulips
Kenneth at Blogzilly
Lisa at Elijahland
Jocalyn at Kendall's Hope
Sarah at Life With A Brain Tumor
Colleen at The Princess and The Monkey
Candace at Living With Faith
Tiff at Three Ring Circus
Tara at Too Much Information

BTW: There's a thought-provoking piece on Babble today about the influence of so-called "mommybloggers"; I have to say, I can't stand that term.

Those little, all-important teaching moments



One of those basic tenets you always hear about raising kids is that you should consider everything a learning opportunity. That and, make sure you train your husband to change poopy diapers from day one.

Impromptu teaching has been a big thing with Max, mainly because he doesn't have the biggest attention span for educational board games, he's not yet reading and he doesn't always feel like listening when I read to him. And so, I try to carpe diem.

This weekend, Max was playing in an area at a pool that had sprinklers erupting like mini geysers. I was relaxing on a lounge chair when all of a sudden I tuned in and realized Max was counting to three before he ran through them. It sounded like "Uh, oooh, eee." I grabbed his hand and we went around counting each geyser.

I need to make up more counting games with Max; a good one would be to go to a car dealership and count cars. Or, better yet, trucks. Or we could go to the ice-cream store and count up all the flavors; that's Max above behind the counter at a diner we were at over the weekend, his dream come true. I missed the learning opportunity and I fully blame the tuna melt that put me into a carb trance.

What sort of fun learning games work with your kids?

Tuesday, September 29, 2009

Breastfeeding babies with special needs



My sister, new mommy to Margo, is doing the breastfeeding thing. She's in a little pain, and my boobs are practically aching in sympathy.

I couldn't wait to nurse Max. Make that, I couldn't wait to get my hands on him and just hold him when he was a prisoner of the incubator. I pumped for the two weeks he was in the NICU, and once he was breathing on his own I was able to bottle-feed that milk to him at the hospital. At home, I had a hell of a time breastfeeding. Max never latched on quite right and a feeding could take as long as an hour; sometimes I thought my nipples were going to fall off, they hurt so bad. It got to be a joke between me and Dave: He'd leave for work in the morning, and I'd be sitting on the couch nursing Max; he'd come home from work at night, and I'd be sitting in the same spot, nursing Max, as if I'd never moved. Sometimes, Dave would feed me dinner as I fed Max; breastfeeding got so consuming that I wasn't eating as well as I needed to.

I'm not one of those breastfeeding diehards; I don't believe it's the right choice for every woman. I also think there's some pretty good formula out there these days. But I was determined to do anything and everything I could for Max, and so I kept nursing.

The feedings continued to drag out. I got someone from the La Leche League to come to the house for a consultation, I developed an addiction to Soothies (those gel pads), I tried different positions using the Boppy. Breastfeeding got a little better, but it never felt easy. I thought maybe it was me, or maybe I had weird nipples or something, but in retrospect I know that Max had coordination issues with sucking and head positioning issues because of his tight muscle tone. He had a far easier time gulping milk down from a bottle, and so I became a pro pumper. Cows had nothing over me, I pumped so well.

I made it through ten months. I breastfed Sabrina for about six, and didn't have nearly as much trouble. I'm glad I did it for both my kids, and I'm glad my nipples never fell off.

Did you guys breastfeed?

Photo by Linda G.

Monday, September 28, 2009

Babying our kids vs. giving them independence



It's a line Dave and I walk all the time with Max.

In some ways, Max still needs to be treated much younger than his six years of age and yet, we're so eager to encourage him to do things by himself. Lately, he's been chomping at that bit.

—He needs help being fed, yet he really wants to do it and gets THE biggest grin on his face when he finishes a bowl of food on his own. Especially if it's a bowl of chocolate ice-cream.

—He needs to be helped up the jungle gym at the park, but insists on roaming the platform there alone.

—He needs help lifting up his heavier trucks, but wants to arrange them on his own. He has this thing about keeping them all lined up. Now, if only I could get him to keep my files in order.

—He needs help blowing bubbles—he hasn't yet mastered breathing out—but snorts through his nose and makes it work.

This weekend, we went to the beach. There was an indoor pool with a hot tub at the place where we were staying, and Max was having a blast scooping up the foam from the hot tub and dumping it into the pool. I was letting him do his thing, and turned away literally for two seconds. When I turned back, I watched, horrified, as he leaned a little too far over and fell right into the deep end of the pool. In an instant I was at the edge, leaning over to grab him as the lifeguard jumped in. Max was under water for maybe four seconds.

He came out cracking up; I was weak-kneed. And horrified that I'd done what you're never supposed to do, turn your back on a kid at a pool. Let alone a kid who lacks the judgment not to lean too far over the edge or balance himself or even understand what it means to fall into the deep end.

Max needs his independence. I want to give him that independence. But I can't let my yearnings to let him roam free imperil his safety, especially in situations like this.

Sunday, September 27, 2009

My child may have a disability, but hello! His personality isn't handicapped


Baby Max and his big personality

Friday, I had to take Max to a pediatric hematologist; he has two blood mutations that make him more prone to clotting, part of the suspected reason he had a stroke at birth (a lack of oxygen also supposedly contributed to that catastrophe). I just wanted to make sure things were status quo. Max is fine, and not at risk for having another stroke.

This doctor was very smart, charming, helpful. She made it clear I had better haul my butt to the doctor myself, given that Max inherited said mutations from me (how awfully adorable, we have matching blood mutations). Max was very pleased to have his blood pressure taken, he LOVES that machine, I may have to get him one for his birthday.

As the doctor was examining him, to distract Max I started doing my usual ice-cream routine:

Me: "Does Max like vanilla ice-cream?"
Max: "NOOOOOOOOOOO."
Me: "Does Max like strawberry ice-cream?"
Max: "NOOOOOOOOOOO."
Me: "Does Max like...CHOCOLATE ice-cream?"
Max [vigorously shaking his head up and down and grinning like a loon]: "YES!"

The doctor looked at me and said, "Oh! He has a sense of humor."

OUCH. I mean, COME ON! The kid has cerebral palsy, but one of the symptoms of cp is not incapacitated sense of humor.

It drives me nuts when people—let alone doctors!—don't understand that someone with physical disabilities can have a completely intact personality.

Max may not walk or use his hands perfectly, he may not talk fluently, but inside that body lies one fully-functioning, full-blown personality.

Ever deal with misguided assumptions about your child's capabilities?

Friday, September 25, 2009

Celebs who have kids with special needs



I'm just catching up on this week's events, and read an article detailing what John Travolta revealed during this week's trial against the two so-called human beings accused of trying to extort $25 million dollars from him (doesn't that make your blood BOIL?!).

This part got to me:

"The actor testified that his son Jett, 16, was autistic and suffered seizures every five to 10 days. He said the seizures would last 45 seconds to a minute and Jett typically slept for 12 hours after each one. "He was autistic. He suffered from a seizure disorder," Travolta told the jury when asked about his son's condition."

I know how hard it must have been for Travolta to have to reveal that his son had autism; he reportedly hasn't done so until now. While part of me wishes he had—celebrities can do so much for raising awareness about a disability—I also respect his decision not to have told the world about that.

Colin Farrell has talked about his son, James, having Angelman Syndrome. Neil Young has gone public about his son, Zeke, and his cerebral palsy. And Nashville songwriter Craig Bickhardt, who's written for Ray Charles and Johnny Cash, has a little boy, Jake, with CP. He penned a song for him called "Giant Steps," and it's beautiful. Here's a snippet:

Taking giant steps, giant steps
A leap and a bound barely touching the ground
Time to stretch those wings, try new things
Learning to reach for your best
Taking giant steps

You can download it free here.

Have a gorgeous weekend with your little ones.

xo

Thursday, September 24, 2009

Love note to a new baby



Welcome, beautiful Margo! I was thrilled to meet you, though I must say it is bizarre to me that my little sis, formerly known as Judy Doodie, has a baby.

Upon hearing the news of your arrival, your cousin Sabrina said, and I quote, "You mean she came out of Aunt Judy?" Mercifully, she did not ask HOW, as I am not yet prepared to have that conversation. Someday, you will understand what I am talking about. At that point, ask your mother, not me.

Some wishes for you on this, your first full day of life:

• May you always be happy and healthy.
• May you grow to be as deliciously chubby-cheeked as Max was as a baby.
• May you grow to be as deliciously chubby-thighed as Sabrina was as a baby.
• May you find lots of ways to do good in the world. It needs that.
• May you never encounter evil. Or Spencer and Heidi Pratt.
• May you have as much determination as Max has for overcoming any challenges life may throw your way. And may you do it as cheerfully as he does.
• May you never develop diaper rash, a bad attitude or an addiction to Chef Boyardee Sodium-and-Chemical-Laden Chicken and Rice.
• May you enjoy the comforts of home yet also be curious to explore all sorts of other places, near and far.
• May you have lots and lots of common sense. It gets you through.
• May you have lots and lots of cute clothes, too. Oh, and shoes! I wish you lots and lots of shoes!
• May you have only excellent hair days. (I know your hair looks a little bit like baby chick fuzz right now, but no worries, it's just a stage.)
• May you firmly believe that you are capable of anything.
• May you learn to appreciate good books, Mendelssohn's Violin Concerto in E Minor, ballet, the paintings of Claude Monet, the entire country of Italy, Ring Dings and other of life's finest pleasures. (And don't worry if you don't get opera; I don't get it, either, except for Carmen, Aida and Madama Butterfly, which are worth understanding. Also, run like crazy if a date ever offers to take you to any of Wagner's "Der Ring des Nibelungen," trust me on that one.)
• May you be as sweet, warm, generous, kind and selfless as your mother.
• May you be as brilliant, gorgeous and all-around fabulous as me.
• May you always feel as loved as you are.

Wednesday, September 23, 2009

Anxiety update! Anxiety update!

Of course, mere minutes after I put up the post below, my sister's husband called to say their baby had been born! She's Margo, 7 pounds, 8 ounces. My sister had a c-section after a labor that didn't really progress.

I'm not going to feel completely calm until tomorrow night (Max's problems only became apparent the day after he was born), but for now, my little sis (she's 17 months younger) has a new baby, I am an auntie and I can't wait to wait to get to the hospital and meet Margo.

I'm having one of those roller coaster days



As I type this, my sister is in the hospital, in labor with her first baby. I am very excited, and also very anxious. I think she and her husband know I'm a little cuckoo with concern because he's been calling every few hours with updates. Like he needs to be worrying about me!

After what I went through with Max's birth, I know how horribly wrong things can go. I can't help but freak out a little. Meanwhile my mother told me that my dad, who has Parkinson's, has been muttering about how something's wrong with Judy. We think he may be confusing what happened to Max and her pregnancy, but it's still unnerving.

The other half of my anxiety: last Friday a nurse from Max's school called me at work to report a teacher had seen him staring into space for about ten seconds. The concern is absence seizures,, also known as petit mals. The teacher called his name but did not touch him, which would have been good to try to see if she could snap him out of it (if you can break the trance, it's not an absence seizure). The neurologist didn't think it was a seizure, but said to keep an eye on him, which is what I asked everyone at school to do.
Max staring into space is not a new thing; he does it, and I can always say his name and he'll snap out of it. His brain needs time to organize itself. He can also zone out when he's in noisy settings.

Yesterday, the nurse called to say she'd been observing him and he'd stared off into space for four seconds. She could not snap him out of it. I told her I wanted her to speak directly with the neurologist; often, he has a bunch of questions about what was noticed, and I thought the two of them should talk. They did today.

The neurologist and I spoke tonight and decided, once and for all, we needed to do an ambulatory EEG (they attach a monitor to Max, we go home and click a button anytime we notice any unusual behavior, go back to the hospital the next day and may have to do another day if nothing shows up). Absence seizures, he explained, most often crop up in kids between ages 4 and 8; it's related to the development stage their brains are going through then. Reassuringly, he said this type of seizure could NOT cause more brain damage. The biggest problem is that kids who suffer this lose clips of time here and there from tuning out. It's disorienting. It can interfere with learning. But, absence seizures could be quickly treatable by putting Max on a new medication (he currently gets one and a half teaspoons of Trileptal twice a day).

Words alone could not express the relief I felt when the doctor said there was no risk of brain damage. Still, the fear of seizures has me in its grips. If I had to play armchair shrink, I'd say the reason is this: I can usually act like everything's going well with Max because he basically looks OK and while he has his challenges, I can pretend they're not so bad.

With seizures, there is no denying that I have a child with brain damage.

So, I am excited for my sister's baby, I am anxious about my sister's baby. I am anxious about the seizure thing, reassured that it's not harmful, and dreading dealing with an EEG.

The roller coaster of emotions you can experience in a mere day when you have a kid with special needs is just unbelievable.

Almost-Wordless Wednesday: Max goes fishing!



He didn't catch anything other than pond scum, but he sure had a fun time trying. It was so exciting just to see him holding the rod. I can't help it: whenever Max tries a new activity, I get giddy. I literally do a happy dance.

Don't you feel the same about your child?

Tuesday, September 22, 2009

Meet my Inner Bad Mommy



As usual, there were a ton of great suggestions on yesterday's post about improv parenting, so, thanks. I also appreciate it whenever one of you comments that I'm a great mom or that I'm so in tune with Max. Only I also end up thinking, "If you only knew...."

Since this is my blog (duh!), I obviously have total control over how I choose to present myself to the world. Believe me, I am by no means The Mother Teresa of Mommies. I am often far, far from it. Here's what I've never told you guys before. (Don't get nervous, I'm not about to confess that I perform satanic rituals or anything, although forcing your kids to like Chef Boyardee is probably up there on the sin list.)

OMG! For years now, I've made the babysitter cut the kids' nails because I get squeamish about it.

OMG! I am so tired—literally and figuratively—of having the kids sleep in my bed that sometimes, if Dave is working late, I'll let the babysitter put the kids to bed. so I don't have anyone kicking me/accidentally whacking me/poking me in the middle of the night with the news flash, "MOMMY, I HAVE TO GO PEE PEE." There is nothing quite like being woken out of a deep slumber with the words, "MOMMY, I HAVE TO GO PEE PEE." (Well, other than, "MOMMY, I WENT PEE PEE ON YOUR BED.")

OMG! When I don't understand what Max is trying to say, I still nod my head and say "Yes, Max!"

OMG! I haven't sorted through the kids toys in the basement for years. I think they probably still have pacifiers down there.

OMG! I have decided that the kids are going to wear last year's Halloween costumes this year. Max is maybe a wee bit old for the Cars costume, Sabrina may be a bit chilly because the Little Mermaid top is belly-baring and she doesn't like to wear a shirt beneath, and I don't care.

OMG! My kids are addicted to Chef Boyardee Sodium-and-Chemical Laden Chicken and Rice and it's all my fault.

OMG! I have let the kids watch a Grossology episode called Fartzilla—yes, Fartzilla—twice in a row in the mornings, just so I can get forty more minutes of sleep.

OMG! When Sabrina says things like, "I don't want Daddy! I want Mommy!" or Max clings to me for dear life and motions Dave away, I am secretly pleased.

OMG! I am still not sure how to operate approximately 71.5 percent of the kids' electronic toys.

OMG! Dave got a scooter during his recent pre-mid-life-crisis phase. This kind:

Lately, I've been fantasizing about my own pre-mid-life crisis, only mine involves getting on an airplane by myself and going to a spa in Italy's Lake Como region, where nobody knows me and nobody wakes me up in the middle of the night saying, "MAMA, VOGLIO ANDARE PEE PEE."

OMG! I've been known to leave the house without critical things like seizure medication/diapers/snacks/patience.

OMG! I've posted updates on the swine flu, yet I have still not called our pediatrician to ask him what he thinks about the kids getting the vaccine.

OMG! When Max spots an airplane and tells me that he wants to go on one, I lie and say "Soon! Very soon!"

OMG! I have put the kids in the car and driven them around for no reason other than 1) I am going stir crazy at home and 2) I like to look at house.

OMG! When Sabrina gets all stubborn and decides she is not going to wear a dress because she'd rather wear her Princess shirt for like the 147th time that week, or Max wants to wear jeans yet again, I get all stubborn right back and boss them into it even though you're supposed to let kids make choices because I'm the Mommy and I said so.

OMG! OMG! Sometimes, I'd rather blog about the kids than play one more game of catch the train or Princess Dominos with them.



Photo from coolpl8z

Monday, September 21, 2009

The powers of make-due parenting



That was a lively discussion on the post about including kids with special needs in mainstream classes (and all parts of life). The winners of the Including Samuel DVDs are Mary and Melanie. Congrats! Contact me at lovethatmax@gmail.com and I'll pass your e-mails along to the director (Samuel's dad), Dan Habib. He's awesome.

This weekend was absolutely bee-yoo-tiful. We were outdoors a lot; Max rode his tractor, Sabrina was on her bike. It was hard to get him inside—transitions unnerve him. So, yesterday, I made his lunch (ravioli and sweet potatoes, the kid can't get enough sweet potatoes), and Dave plopped him in the car seat and fed him in the car.

Over the years, we've learned to adapt to Max's sensitivities and needs in all sorts of ways. Clothes, for example. He is often insistent on wearing pajama tops out. I've figured out that if I start talking nonstop about Max going on an airplane, I can distract him enough to get on an actual top. And when he gets agitated or upset about something, I can calm him down by scooping him up in my arms and running back and forth and back and forth, jiggling him. When he's in a new place and hesitant, Dave puts him on his shoulders; being able to watch the world from up there soothes him.

I don't bend over backwards to appease Sabrina like this because I can reason with her (well, mostly). Max doesn't yet understand reason; he understands the simple joys in life, like sweet potatoes, airplanes and getting a ride from Mom or Dad. And so, that's what we give him.

What special accommodations have you been making for your kids lately?

Sunday, September 20, 2009

Update on the swine flu vaccine


I think this van needs the vaccine

Andy from Therapies for Cerebral Palsy e-mailed me last night (I thought I was the only one online at 1 a.m.!) to say he'd done a post on swine flu and kids with cp. Dave had mentioned he heard the vaccine would be out the first week of October. I love him, but he's not a reliable medical source so I Googled.

By all reports, the vaccine is going to start trickling out the first week in October, and the people at the front of the line are anyone age six months to 24, pregnant women, and younger adults with risky healthy conditions. Here's a good article on the topic published today.

They're saying it's safe, although they're also saying they're just now doing clinical trials for kids. Comments on the original post I did also gave me pause for thought, but I am leaning toward getting it for the kids. The potential consequences of getting the vaccine, in my mind, seem worse than the potential consequences of not getting it.


Photo from Jalopnik

Friday, September 18, 2009

Katherine Heigl adopts a kid with special needs, people show their ignorance



I just saw photos on Celebrity Baby Blog of Naleigh, the 10-month-old girl actress Katherine Heigl and Josh Kelley adopted from Korea. Katherine's mentioned that Naleigh has special needs.

I was fascinated and horrified by the comments on the post. Lots of people gushed over the baby, and rightly so. She's very yummy. Some wondered what her special needs were. A couple said things like "I think her 'special needs' are minor according to these pictures," which made my blood boil. As if you can tell anything by looking! Grrrr. Now that I have a kid with special needs, I've become acutely aware of the mind-blowing ignorance people have about them. Those people seem far more mentally disabled than my child.

Oh, and also, when a commenter called adoption a "selfless act" someone else jumped in to say, "Since when is adoption a selfless act??? Having the honor to become a mommy or daddy to a child is a privilege and a gift. Their lives have been blessed by their little addition, and as much as they have helped this little girl obtain a better life, they themselves have gotten just as much if not more out of it. I think adoption is wonderful, but I would never consider someone who adopts a child a hero, or selfless."

Sorry, lady, but when someone adopts a kid with special needs, that is a completely selfless act. Period. I am in awe of people who've done this—and especially in awe of families who have adopted more than one kid with special needs.

I honestly don't know that I would have willingly chosen this path.

Thursday, September 17, 2009

How not to be a bitch



Dear Insurance Company,

I got a letter TWO months ago saying that an external review board had granted payment for dysphagia therapy for Max, and yet you have not paid me for a single session. WTF? And furthermore, WTF?

Kindly let me know when I can expect the reimbursement granted to me by the external review board. Thank you!


Dear Influential Person at Max's School,

Hello. I have written you twice now, asking that you call so we can discuss Max's potty training, with no response. He is six, closing in on seven, don't you think it's time? I have not heard a peep from you since school started. So it would be really great to hear from you. Don't you think?

Hello. I would love to discuss your thoughts on potty training Max. Looking forward to hearing from you!


Dear School Bus Company,

When you decided the driver would be showing up twenty minutes earlier than usual, it threw our entire morning routine, already rushed, into a tizzy. What's worse: Some days now the driver shows up on time, and some days she is 10 to 20 minutes late. It is not fun to play guess-what-time-the-driver-is-coming today. Max could use that sleep in the morning, and I sure could use the sanity. Four words: Get your act together!

It would be great if we can pin down a concrete time for pickup. Please call at your convenience. Thanks so much!


Dear Mother In Law,

You can pretend that you did not say really, really mean things to me back in April, but I have an excellent memory and unless you can find a new soul on ebay or something, I don't think things are going to work out between us.

Thank you for the kind dinner offer. I cannot attend as there is the possibility I may have to get dental implants/travel to Bora Bora/repaint my entire house and the neighbors' house too, but I am sure the kids and Dave will have a fabulous time!

Wednesday, September 16, 2009

How a kid with special needs affects your marriage: extreme honesty



This morning, I was trying to get up a flight of stairs at the train station only there was an elderly couple in front of me moving in slow-mo. As I trudged up behind them, going at their pace, I noticed how gently the husband was cupping his wife's elbow. Then they got to a landing, and as I darted around them I heard him say to her, in the sweetest way, "Are you tired, sweetheart? We can rest here a while."

That just about made me melt. And it made me a little wistful, too; I want a relationship that's just as tender. So often, though, ours is tension-filled. Dave and I love each other deeply. Yet there are so many details about Max to look after, so many ways we could be helping him do better, so many anxieties about his well-being, that at times they form a gray cloud hanging over our relationship.

These are the things Dave and I might go back and forth about during any given week:
...I know you don't want Max to wear his bib in public, but he needs to wear it or his shirt will get wet from the drool.
...If you keep feeding him everything, he's never going to learn to feed himself.
...Did you load the Dynavox with new pictures? No? We need to! That's his best way of communicating, and we're getting lazy about it.
...Uh-oh, why is Max suddenly so sleepy? Do you think it's a sign of seizures?
...Did you give him the seizure medication this morning?
...We have to order more seizure medication.
...Sigh, he's pretty upset, I'm not sure Max is going to let us stay for dinner at this restaurant, it's really noisy, maybe you'd better take him outside. OK? We'll take turns eating.
...The insurance company is saying they won't pay for any occupational therapy whatsoever, your turn to deal with them!
...We both really need to work on the toilet training, otherwise Max will never get there.
...I do not think it is good for Max to sit on the floor and push the same car back and forth and back and forth for a half hour, can we get him to do another activity?
...His right leg seems really tight. Do you think he's going to start needing Botox in his leg? Speaking of which, isn't he due for a visit to see if he needs more Botox in his hands?

And so on and so on.

I can honestly say that there have been times when the stress and fatigue have been so great I have snapped at Dave for no reason at all. I can honestly say there have been times when Dave's oh-I'll-let-her-handle-it attitude has gotten to me so much I could have cheerfully clonked him. I can honestly say that there have been times when the worries about Max have been so overwhelming that I have not felt like having sex. I can honestly say there have been times when I've looked at our wedding pictures and wondered what happened to that glowingly happy couple.

I can also honestly say that our marriage still rests on a base of mutual adoration; we hold hands when we walk down the street, kiss just because, plan date nights, find other places to do things when the kids take over our bed. We respect each other's strengths: I am the researcher, the booker of appointments, the scheduler, and Dave is Silly Doting Daddy who can get Max giggling with his crazy noises and funny games and fart talents. We compensate for each other's weaknesses: Dave yanks me back to reality when my fears get the best of me, I point out when he's in denial. We can make each other laugh, even when things get totally insane. And we have together experienced moments of amazing euphoria with Max, bursts of bliss only parents of a child with special needs could experience. Like when Max took his first few steps, the steps doctors told us he might never take. Like when Max does anything for the first time. Or when a doctor recently told us Max would probably be a mainstreamed adult when he grew up.

I do not think our marriage is stronger from raising a child with special needs. Nor do I think its roots are decaying and, like some big old oak tree, it's at risk of someday toppling over and crashing. What I know is that our marriage is solid. It's been through the worst of storms, it's survived, and while it may not be perfect it is good. We are happier together. We are tougher together. We are better for Max together. And there is love, there is always love.


Photo by forestlady

Tuesday, September 15, 2009

Group therapy session: feeding kids with special needs on the go



On Monday's post about Curious George blueberry pancakes, Amy came out of the lurking closet (yay, Amy!) to ask how we handle feeding Max when we travel. She wrote, "As Emma is getting better, she is longing to go to Disney World. To be frank, it will be a dream come true (on many levels) if we can make this happen.... I am curious what you feed Max on trips. Where you eat? How accommodating are theme park or cruise people about cooking foods to a soft state??"

This one's easy. Both because I've learned to call ahead, and also because places are remarkably accommodating. Also, Max really likes to eat (a chip off the old block); here he is sampling North Carolina BBQ on our recent trip to Duke University for his stem cell infusion.

If we are going to a hotel, I will call a few weeks before and ask the front desk who to speak with about special dietary needs. Then I'll explain about Max and why he needs finely-chopped food. That said, give us some mayo or ketchup and we can make nearly any food out there edible for Max (though I doubt that would win us an Iron Chef competition).

I will also ask if we can have a fridge in the room, free of charge, because of Max's special needs; that enables us to shop for foods in local supermarkets. Or we'll pick up some canned foods. Max is a big fan of Chef Boyardee Chicken and Rice and Chef Boyardee Mini Ravioli, which come with snap-off lids. While they're high in sodium, I don't think they're the worst foods to eat, especially on vacation. I'll ask room service to heat them up; once you explain that you have a child with special needs, they usually agree. Or I'll see if there is some sort of microwave for guest usage in the hotel. Once, I made Dave dash out of a motel room to the Denny's across the street and ask them to heat up something for Max. They did! We have no shame. Since having Max, that's pretty much become our unofficial motto.

This past May, we went on a Disney Cruise, and there were so many food choices Max actually put on a few pounds (um, us too). Our waiter made sure we got the desired mushy texture. When you book the cruise, just let them know about any dairy-free, gluten-free, sugar-free or peanut-free restrictions. Little-known secret: room service on the cruise is free! Just be warned, your child may get used to it. Now whenever we go to hotels, Max demands room service.

We've also been to Disney World. Here's Max at a character dinner in the Crystal Palace:


There are a ton of restaurants at Disney. Check out this complete list of menus for every single eating establishment there, down to the kiosks. For specific advice, contact Disney at SpecialDiets@DisneyWorld.com or 407-824-5967; also note their Special Dietary Requests page.

I hope this is helpful! I'll bet others here will have more advice. Speaking of which, I'm thinking of starting a regular "group therapy session." You ask whatever q is on your mind, I'll put it up in a post and everyone can weigh in. So, share advice for Amy here as well as any questions you'd like answered about raising kids with special needs and/or the meaning of life.

Monday, September 14, 2009

The video that should have won for Best Female Video of the Year

Dear MTV Video Music Awards,

I am writing to you to express my outrage and shock over the events of Sunday night. Why, I ask you, was the following never nominated for Best Female Video of the Year? Talk about controversy!

I sent you copies of the tape, which was directed by the one and only Steven Spielberg. Or was it Paula Abdul? I can't recall. I roped in Jason Wu, the guy who created Michelle Obama's inaugural gown, to design the ultraglamourous pink outfit—no wardrobe malfunction there, you will note! I had a celeb hairstylist do those loose cascading curls. There was even a world-renowned backup singer on hand. OK, so he didn't sing.

Furthermore, MTV, what is up with airing the show so much past bedtime?

As her publicist, it's my obligation to inform you: You picked the wrong girl.

video

The (slightly) haunted pancake breakfast



This was the scene at our house on Sunday morning. Blueberry pancakes for breakfast, because we got the book Curious George Makes Pancakes out of the library last week and both kids have had pancakes on the brain ever since.

"Mommy, are we going to make them like Curious George maded them?" Sabrina asked (she hasn't quite gotten the hang of past tense). "Mommy, are they going to taste like the ones George made? Mommy, will they have a smiley face?"

"An-cakes! An-cakes!" Max said.

And so, there we were, whipping up a batch. A peaceful scene. A happy scene. A scene, however, that was a little haunted by ghosts of memories past.

Sunday mornings at our house used to be far from mellow, because it was such a trauma feeding Max. Yes, a trauma. He had a really hard time keeping food in his mouth because of poor oral-motor coordination, and at least half of whatever we'd spoon in would come out again. It could sometimes literally take an hour to feed him. We also needed to distract him, as otherwise he wouldn't sit at the table, so a DVD would be playing. And the mess was phenomenal. Those stressful mornings were the opposite of the cozy ones I'd always envisioned before I had kids.

These days, Sunday mornings are kind of relaxed, as relaxed as Sunday mornings can be with any kids at all. They're fun, too. Max can help mix the batter. He loves to watch the pancakes cooking. He tries to eat them by himself and Dave or I help with the rest. He is actually saying the word "pancake," which in itself is miraculous.

And yet, I feel a bit on edge, as if any second these mornings could be taken away from me and I'll return to the angst-ridden ones of the early years with Max.

Mostly, though, I enjoyed our pancake breakfast, in all its glorious, happy-faced stickiness.

With every meal, every day, every week, every month, every year, I am moving past the trauma.

And the winners of the Lisa Leonard necklaces are...

...Julia O'C and Mogrill. Congratulations! You will be hearing from Lisa Leonard shortly (or someone from the company) to find out where to ship your necklaces.



A big XOXO to everyone who entered. I wish us all a great school year for ourselves and our children.

Look for more giveaways in the near future! I can't think of any people who deserve them more than us moms. Come to think of it, I think I'm going to get myself one of these necklaces for the holidays.

WORD TO DAVE: THAT'S A HINT, HONEY, IF YOU ARE READING THIS!

Saturday, September 12, 2009

Sometimes, I miss Life Before Max


I know, it's hard to imagine—just look at the kid.

This is what I'm taking about:

Dave and I went out to dinner tonight with my good friend Lyla and her husband, David, at the Outback. Over a Bloomin' Onion (I think I have used up all of my calories for the rest of the year) and strip streaks, we talked about 9/11 and its aftermath. We laughed about old stories, like the time Dave and I were walking into a restaurant and suddenly, this kidney stone I had decided to make its way down my insides (don't ever pass a kidney stone, if you can avoid it) and I turned bright red with pain and bent over, clutching my belly, and gasped, "I have go to to the hospital NOW!" and Dave said, "But can I just get a sandwich to go?" (We didn't get the sandwich.) We talked about our jobs and home renovations and a blog David is into called Sexy People that features people's old photos of themselves. We laughed more about, oh, I don't remember. But I do remember exactly how I felt over dinner: carefree. And, free. And like an adult. Not a parent, an adult. And a little sentimental.

During these rare dinners out with friends, a longing rises within me for that time in my life before I had kids.

I'll bet plenty of parents have similar pangs on occasion. You take on a world of responsibilities when you have a child. You suddenly have a little less fun and a whole lot less time for yourself. But for me, there is the added yearning of a time when I was free from the worries, the tears, the fears, the what-ifs, the will-he-have-a-seizure-agains, the will-he-be-OKs, and all of that.

We got home at 11; Max woke up at 11:30 and stood at the top of the stairs, sniffling loudly. It's how he announces he has woken up. I walked upstairs, scooped him up, buried my face in his warm neck, nuzzled him and breathed him in.

It made me happy.

But, damn, that Bloomin' Onion is lying in my stomach like a ton of lead.

Friday, September 11, 2009

Including kids with special needs in mainstream classrooms (and ALL parts of life)



I've been thinking a lot about inclusion lately. It started when I read a post on Tiptoeing Through The Tulips about how Cristin's happy to keep her little boy Graham, who's deaf, in a school for the deaf.

I am totally with her on that one. After Max aged out of Early Intervention, we pretty much decided that he'd be best off in a school for kids with special needs. Between all the OT, PT and speech therapy he needed, it made the most sense. I also wanted teachers who specialize in working with kids who have disabilities to be on hand to help with other skills, like feeding and toilet training.

I still feel content with having Max in a special school (he's bussed there, our district pays for everything), though over the years I've certainly made requests about how he's "included" there. Back when he first entered school, I felt that Max should be in a class where he was functioning mid-way between the other students; I wanted him to have kids to look up to, for inspiration, and also kids who he was ahead of, for confidence. This year, though, I wanted Max to be in a class with mostly verbal other kids and a class that posed more challenges to him. It won't be easy for him, but he's ready.

When Max was just under two years old, I read this article in The New York Times Magazine about a kid named Thomas who has cp. His dad, Richard Ellenson (I blogged about their recent visit with The Yankees), had worked the system to get his child included in a mainstream class. It was a herculean feat, and I clipped and saved the article for inspiration. Over the years, it's given me pause; should I be pushing for Max to be around typically-developing kids? While I'm still content in my decision, inclusion may very well be in his future.

There's a documentary out on the topic that I'm so eager to see, Including Samuel; I first heard of it through the awesome AZ Chapman who writes the blog Life and Times of A Teen With Disabilities. Shot and produced by photojournalist Dan Habib, the film is about his son, Samuel, who has cerebral palsy and his family's efforts to include him in all parts of their lives. The film also follows four other people with disabilities and their families. I quote from the site's description: "Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion." It's airing on TV stations around the country over the next two months, here's the schedule.

Dan has kindly offered to give away two DVDs of Including Samuel; he asks that whoever wins one commits to hosting a viewing party with at least ten people, and then reports back on how the screening went/reactions people had/discussions it inspired (you'll receive a packet that explains how to plan the party and report back).

Leave a comment below with your thoughts on inclusion and children with special needs, and you'll be entered to win; the contest will be open until Sunday September 20, and I'll announce the winner on Monday September 21. Note, it is best if you submit a comment using a Blogger I.D.; if you leave a comment as Anonymous, please include your name and e-mail.

There's something about Samuel that reminds me of Max! Just look at his beautiful face in this clip from the film.

Thursday, September 10, 2009

9/11: I will never forget



Tomorrow, I'm going to be thinking of the 2985 people who lost their lives on 9/11. It's hard to believe it's been eight years; I was headed into New York City that day by ferry and saw both towers burning. They are still hauntingly vivid in my mind. I can still also picture the "Missing" fliers hanging everywhere—on walls, poles, store windows, bulletin boards, any empty stretch of space. As the weeks passed, they faded and crumbled, along with the remaining hopes of the desperate parents and family who'd posted them.

I was grateful back then that I hadn't yet had children, so I could mourn and cry freely at home. When the kids are old enough, I am going to talk with them about that day. But they're still little so tonight, I am saying a prayer for those innocent lost souls and then kissing and kissing my sleeping Max and Sabrina.

Photo by Hilari

Max has outgrown his room—got any good ideas?


On my long list of things to do: update Max's room.


It has barely changed since he was a baby, other than the addition of a hanging airplane and a fire truck big-boy bed (which he never sleeps in, as he vastly prefers my big-girl bed). The baby-animal rug has got to go, cute as it is. The rocking chair is also too infantile for him. I still like the color of the walls a lot, though: Sherwin Williams' Baize Green.


At six, Max still has a changing table, which I could easily convert to a bookcase but he still needs changing. He's getting long for it, and he's also getting heavy to lift onto it. I worry about that. Maybe this will be the year he gets fully toilet trained.

I get very sentimental about this room. I loved putting it together, and had it finished before Max was born. When he ended up in the NICU, it made me cry to see it empty. We kept the door closed until we brought him home. I still love it, but it's stuck in a time warp. Max has progressed; his room has not.

For starters, I got him new bedding, found it on sale at Target. I showed Max the photo and ordered it after he gave it a big "YES!!!"


I am open to any suggestions for a big-boy room that I can run by my client (aka Max).

P.S. There's still plenty of time to enter to win a Lisa Leonard necklace.

Wednesday, September 9, 2009

Max's best friend—and worst tormenter


She's one and the same person. She's Sabrina.

I can't say I'm unfamiliar with sibling rivalry; my sister and I had a long-running case of it (hi, Judy!). I was pretty much the tormenter, and I don't think she'd argue with me on that. When we were toddlers, I can vividly recall chanting words that struck fear into her heart: "YOU'RE NOT GOING TO HAVE A BIRTHDAY PARTY! YOU'RE NOT GOING TO HAVE A BIRTHDAY PARTY!" We fought over everything: whose half of the sandwich was bigger, who colored better, when to turn off the lights at night in the room we shared (I'm a night owl, she's not). We're best friends now. My little sis is due to have her first baby next week!

There's a different dynamic with Sabrina and Max, though. She may be two years younger than he is, but she is more mature, capable and cognizant. She also understands that he is not like other kids. She is also jealous of the extra attention she gets. She is also not great with the sharing thing yet. And, not for nothing, she has ten pounds on him.

She's his best friend when...she helps him do stuff, like pick up things he's having trouble grasping or holding.

She's his worst tormenter when...she grabs stuff he has, out of jealousy. Even when I buy each of them the same exact toy, inevitably she ends up wanting his over hers.

She's his best friend when...she translates what he's saying, like "Max says he wants to ride his bike!" or "Max wants to wear his Cars pajamas!" or "Max says he wants to watch Hannah Montana" (sometimes, we suspect she is not exactly translating what he wants).

She's his worst tormenter when...she pushes him down. Max is not so steady on his feet; when Sabrina gets mad at him, I've caught her giving him a shove and he inevitably falls. I've also caught her pinching him.

She's his best friend when...she lets him sit in her car seat. He always wants to sit in her car seat.

She's his worst tormenter when...she refuses to let him sit in her car seat, just because she knows he wants to.

She's his best friend when...she draws stuff for him. On every single drawing she's done lately, she writes both "Sabrina" and "Max."

She's his worst tormenter when...she does that "Na, na, na, na, na" thing—as in, "Na, na, na, na, na, you can't catch me!"

She's his best friend when...she gets all protective of him. Even downright motherly. Like when she wants to help rinse the shampoo out of his hair in the bath. Or when she holds a cup of water for him to drink from. Or when they're in a new situation and Max is feeling unsure of himself.

These videos, taken at the amusement park we visited over the weekend, pretty much sum up their relationship.

I totally forgot Max's swim gear (Space Cadet Mommy alert!). So I dressed the poor boy in a t-shirt and a Swimmies diaper I found in the trunk of the car. A Little Mermaid Swimmies diaper, no less. Max didn't seem to care and I figured nobody would notice, since the shirt was long. Not with Sabrina around. What she's saying to him: "Look at that tummy! Look at that tummy!" Like she's one to talk!

video

Now check out this video. Max was a little afraid of the sprinklers; Sabrina kept wetting her hands and running over to wet his face, getting him to enjoy the water.

video

Ultimately, I know her love for him runs strong and deep.

Tuesday, September 8, 2009

A back-to-school giveaway...for moms! Chic necklace, anyone?



The kids got new clothes and school supplies; you deserve something new, too, and I'm not talking about a pencil case. I am a huge fan of the jewelry from Lisa Leonard Designs. It's quirky, pretty and fun, all at the same time. I own one of her necklaces, and I get compliments whenever I wear it.

The lovely Lisa has generously offered to give two of you a Kisses & Hugs necklace, each worth $56. To enter, just leave a comment about what you hope to achieve this school year! Me, I'm on a continued quest for more patience.

I'll randomly pick two winners by Sunday at midnight.

UPDATE: It's best if you could leave a comment using a registered Blogger.com I.D. If you leave a comment as "Anonymous," you must leave your name and e-mail address in order to be eligible.

Monday, September 7, 2009

I'm a finalist in a contest!

Labor Day excitment: I'm a semifinalist in a contest sponsored by Travel Mamas! I did a post on traveling with kids who have special needs. This despite the fact that I recommended things like bringing along Valium and a mallet to conk anyone who doesn't accommodate your child. So, here's my shameless plug: Check it out, leave a comment and vote for, er, me!

(Note, you have to go back to the homepage after you read the post and click on the "cast your vote" link to vote.)

Thanks for the support!

Oh, and don't miss today's earlier post about swine flu, excellent comments there.

Swine flu and kids with cerebral palsy, epilepsy and developmental delays

Hope everyone's enjoying the long weekend! Max is back to school tomorrow. He shakes his head when I ask if he wants to go to school; the kid's had an entirely too-fun summer. He's gained a few pounds, and I'm sure it's from all the chocolate ice-cream; it looks way better on him than it does on me.

I'm a little worried about that damn flu and all the lovely germs that will surely be flying around school. As a kid with cp, Max is in the high-risk category; a report came out this week that kids with "neurodevelopmental conditions"—including epilepsy, cerebral palsy or developmental delays—are at higher risk for getting it. I'm feeling a little envious of homeschooled kids right now.

I've already gotten both kids the regular flu shot, and I've made sure Max will be at the top of the list when the swine flu shot arrives at the doctor's office, supposedly sometime mid-October. To quote a doctor from the U.S. Center for Disease Control and Prevention, kids with underlying medical conditions "are at the front of the line for vaccination when it becomes available."

So, I'm concerned, but I'm not panicking; most kids get only mild cases. The CDC is saying complications from the H1N1 virus are similar to ones from the typical seasonal flu. The main difference is that the swine flu has a higher rate of affecting kids five and older.

A while ago, I did a post on how I'm not germphobic. On Saturday, I went to Costco and got The World's Biggest Bottle of Hand Sanitizer. I'm not going to bathe the kids in it or anything, but you can bet I'll be slathering it onto their little hands and mine pretty regularly.

Like we don't have enough to worry about!!!

Saturday, September 5, 2009

Words to live by

We're on an amusement park kick, following our Hersheypark adventure, and we're off to another one this weekend. We'll be staying at a nearby hotel. I LOVE staying in hotel rooms. Sometimes, I wish that I could live in a hotel room.

Some link love: The ever-wise and lovely Katy at Bird on the Street recently put up a list of things she believes in about raising a kid with special needs. I agreed with every single one, and especially loved:

"I no longer believe that brain damage=intellectual deficit. There are exceptions to this, but go ahead and assume that your child understands, explain consequences, and talk to them through out the day. Their bodies may belie their true understanding. Giving them the benefit of the doubt is free."

You said it, sister!

Check out Katy's whole list here.

Friday, September 4, 2009

Things only a parent of a kid with special needs appreciates







Here's Max, exploring some sand at the park.

I felt blissfully happy watching him. To see him using his hands, often tight from the cerebral palsy, spread out and feeling the sand. To see him focusing, not always easy for him, so intensely. To see that balance. What balance! I had no idea he could stoop.

Every week, there are dozens of moments when Max does something that amazes me. Like when he says a new word. Or when he holds a cup with both hands, not just his left one (the "good" hand). Or when he attempts to put on his shoes by himself or brush his own hair. Or when he climbs up the stairs upright, instead of clambering up on his hands and knees.

For many other moms, a kid doing any of this stuff is no big deal. To me, it's as endlessly thrilling as there are grains of sand.

Thursday, September 3, 2009

Sablog: a "blog" by Sabrina, age 4 & 1/2



So, did you miss Max when he went to the doctor last week?

Sabrina: "I want to be Hannah Montana for Halloween!"

Sounds good, but first, did you miss Max when he went to the doctor?

Sabrina: "Yeah."

How much?

Sabrina: "Like a lot of days."

What do you really, really love about your brother?

Sabrina: "Because sometimes he hits me and sometimes he be nice."

Why does he hit you?

Sabrina: "Because...I don't know."

Do you ever hit him?

Sabrina: "No...yeah."

Why do you hit him?

Sabrina: "Because he hits me, then I start to hit him. He pulls my hair. Oooh my God! There's a fly over there that looks like a spider but it's a fly! And if you touch it, it will be even dead-er!"

OK, let me get rid of that fly. There. So, what do you like to play with Max?

Sabrina: "I'm not telling you."

What's your favorite game to play?

Sabrina: "Uh, Zingo. I like to be Jasmine, too, for Halloween because she has a pigtail, but I like Ariel the best. After it becomes Halloween I'll wear my Sleeping Beauty costume, but first of all, can you get me a new Ariel costume?"

I think so! But last thing, what do you want everybody to know about Max today?

Sabrina: "Max likes to play games and put on videos. And he likes to eat chicken and rice and chocolate pudding. And nooooo more questions. I'm not answering any more!"

Well, then have your people call my people!

Wednesday, September 2, 2009

Yet more helpful stuff for kids with special needs

Some things Max has been enjoying lately:

A Zipper Ball toy, which helps kids with motor coordination. You hold one end, your kid grabs the other and you slide the balls back and forth.


Easy-grip paintbrushes.


Finger crayons: The bulbs are much simpler to grasp than regular crayons.

Totlol: a YouTube-like site for kids.

DLTK's Crafts for Kids: has free printable pages for coloring and crafts.

If you've found any great stuff your kids have been loving, share!

Related past posts:
Genius inventions for kids with special needs
Really helpful stuff for kids with special needs
Smart toys for kids (and the parents who can't stop buying them)

Tuesday, September 1, 2009

How do you deal when your child annoys another kid (or worse)?



Looks like Max is playing nicely here, right? But what happened on Sunday at the pool is still haunting me.

We'd gone to the concession stand to get—you guessed it—chocolate ice-cream. As we walked back, Max spotted a little girl playing with his toy boat, dashed over and grabbed it. "Max, we don't grab, it's not nice," I said.

Well, Max got all riled up and went stomping around the kiddie pool. When he got to the area where this little girl—around three years old— was standing, he stomped very close to her. During Max's next lap around the pool, he reached out and hit her on the head. Not hard, and she didn't cry, but still.

I was horrified. Her dad grabbed her and protectively wrapped his arms around her, eyeing Max cautiously. Obviously, he needed to do that; if the situation were reversed, I would have shielded Max. But it hurt to see a parent having to protect his child from Max, my Max, who at the age of six seemingly should know better than to hit but who does not quite understand that yet.

Max is still figuring out how to interact with other kids. Earlier in the day, he had irked another boy because he was pretending to be a scary monster and roaring and chasing this kid, who got tired of being monster bait and started whining, "Stop, Max, stop." Max didn't get that the kid no longer found the game fun, and kept right on "AAAAAAARGH!"-ing him. He doesn't yet pick up on social cues or understand when other kids get frustrated. I've seen it happen before.

"I am so sorry," I said to this dad; I stopped short of saying "he has special needs." Sometimes, I just don't want to go there, you know? Afterward, though, I thought that maybe I should have explained. It's not always immediately obvious that Max is disabled because he is able to walk pretty well. That day, as he rambled about the pool, he must have seemed like your average bratty kid, making trouble.

What would you have done?