Friday, March 30, 2012

Fun with reading!

Sabrina likes reading to Max at night. It's one part sisterly love, one part show-off because she's very proud of herself for reading so well.

This is a beautiful thing. Except that when I'm reading to Max and getting him to sound out words, Sabrina likes to interject and say them herself: "Stop!" "Green!" "Purple!"

"Sabrina, let your brother read!" I'll say.

"OK," she'll say, sweetly. And then 5 minutes later, she's back again, reading for him.

Mostly, I'm glad they're both loving reading. For a long time, Max didn't seem so interested. Now I'm trying to expand his repertoire. He has a thing for a book called (what else) Max, about a superhero kid and his superhero family.

Another favorite: I'm Your Bus, which follows a bus throughout the day as it cheerfully chants "I'm your bus!" Max is partial to books with "Max" and talking buses. 

A few months ago, he inherited Sabrina's BOB Books, Set 1: Beginning Readers, and has lately gotten into them. They're simply illustrated, with just a few words on each page.

Up next: 

Thursday, March 29, 2012

11 things you do when you're tired

Usually, I go to sleep around midnight. I function (and look) better when I crash earlier but staying up till 12 (sometimes 1) is the only way I can finish up stuff. I wake up at around 7, along with Max who is still making his way to our bed in the middle of the night (DON'T GET ME STARTED).

Most days, I'm fine; I have good energy, and it's got nothing to do with eating right or exercising a lot because I am sorely lacking in both areas. Sometimes, though, the sleep deprivation hits me and I fantasize about hiding in our attic—where we have a full bed—and sleeping for the whole day. This is the stuff my fantasies are made of these days.

What I usually do when I'm zonked:

1. Power through because there's another load of laundry to do and food to prepare and forms to fill out and YOU KNOW.
2. Have my second iced-coffee of the day. Or third. Or fourth.
3. Get grumpy and irrational with Dave.
4. Torture myself by looking at the lines under my eyes in natural lighting.

5. Watch "talking" cat videos on YouTube, the sort of thing you most appreciate when you are deliriously tired.
6. Or just sit on the couch and stare vacantly into space, although inevitably I'll notice something that needs cleaning like the hoard of crumbs in between the sofa cushions.
7. Crave tuna melts.
8. Run really cold water over my wrists; there are pulse points there and it perks you up. Studies have shown that actually getting sleep perks you up, too.
9. Check the pantry to see if somebody maybe bought chocolate. Nope.

10. Buy random kitchen gadgets from that I will use approximately once every ten years, like an avocado slicer.
11. Make lists.

What time do you usually go to sleep? And what do you do when you're really tired?

Wednesday, March 28, 2012

Way not to go, Max!

Max is definitely lacking in one area. This became extremely apparent to me yesterday evening, when I was hanging out with the kids and Sabrina was sharing stuff on her mind. Oversharing, one might say.

"Mommy," said Sabrina, "my eyes don't feel right!"
"Mommy," said Sabrina, "this game is bor-ing! Why are we playing it?"
"Mommy," said Guess Who, "this ice-cream is really cold!"
"Mommy, this book that you ordered for me isn't the same as the one that we took out of the library! The pictures are different!"
"Mommy, I'm too tired to take a bath!"
"Mommy, why can't I find my favorite pajamas?"
"Mommy, why does Max get to stay up later?"

It seems odd that I've never noticed it before. But it's true:

Max isn't yet capable of complaining. 

I'm not quite clear on what developmental stage this would typically occur at. I'm assuming none of those child-rearing books says things like "Age 7: Child learns to put together words in a sentence with correct punctuation. Also, child starts complaining excessively." But for whatever reason, Max doesn't yet have complaining in him. Which is spectacular, because one child with excessive amounts of griping is about all I can take.

Of course, I could create a "Complaint" category in Max's speech app and program in sentences like "I don't own enough purple clothing!" or "You gave Sabrina more ice-cream!" or "My Cars 2 DVD is really worn out!"

But, dang, I'm not crazy.

Tuesday, March 27, 2012

Special needs parenting rule no. 1: Control yourself first, your child second

For days, I dreaded it. Not some Serious Doctor Appointment. Not a new form of therapy. Not a trip to the dentist. No, I was dreading Max's class trip to a local theater to see a musical production of The Magic School Bus.

Max has never in his life sat through a performance in a theater, not even for the movie Cars 2 (for that, we went to a drive-in and even then he freaked out). And so, I knew he was going to get upset about the play even though for weeks we'd talked about it. And I knew I'd get upset that he was getting upset. These sorts of situations generally leave both of us feeling Not Good.

The day, however, started off with pure, unadulterated glee. When I walked into Max's class, he laughed so hard I thought he'd cry. It's what he does when he's ecstatic. And then, joy of joys, he got to ride a school bus with me sitting beside him and his best friend C in the seat in front of us.  

At the theater, a lot of classes from other schools were milling around the entrance. Max made it into the lobby before he started shaking his head and saying "Noooooooo."

"It'll be fun, Max—Mommy's here!" I said, and I gently tugged him into the theater. Happily, the last two rows were reserved for his school. I grabbed a seat at the end of a row and pulled Max onto my lap. He began to whimper-wail and generally look terrified. I bear-hugged him. For once, I wanted him to watch a real, live play. If he could just see what it was about, maybe he'd like it.

Minutes went by and Max wasn't letting up, no matter what I said. I offered my iPhone to play with. Not interested. As I sat there—tense, upset and feeling like a child abuser—I had an epiphany. I could a) keep getting uptight about the wailing and the general situation; or b) decide that I wasn't going to react to it.

I went with Plan B. If Max continued to wig out after the thing started, we'd head to the lobby. But I couldn't leave before it began because there was no way he'd return to a darkened auditorium. Sitting it out seemed like the best choice.

The minutes passed slooooowly. I thought about lemon cupcakes I wanted to make (I have a thing for cupcake blogs). I held Max tight and pictured myself mixing the batter with the kids. I felt calmer. Max sniffled and looked warily toward the stage.

"Do you want to take him outside?" his teacher asked, right as I was decorating the cupcakes with pale-yellow buttercream frosting. (Disclaimer: I'm a far better baker in my imagination than I am in real life.)

"No," I said, firmly. "I'm going to see what happens when this starts."

"Do you have headphones?" she asked.

At which point it became very clear: I am so the opposite of a perfect parent. Because I'd totally forgotten Max's noise-blocking headphones. (Which actually would have been very effective for me.)

Another kid in his class wasn't using hers and we borrowed them. Very quickly, Max calmed down. Then at last, the lights dimmed and the play started.

Max watched, mesmerized. I spent most of the play watching him and doing a happy dance inside my heart. Once in a while I'd lift up up one side of the headphones so he could hear the music.


Max quietly sat through the entire one-hour performance. He walked out with a huge smile on his face.

I was so proud of him.

I was proud of me, too.


Sunday, March 25, 2012

A school bans a kid with cerebral palsy from using her walker, a mom takes action

A mom of a kid with cerebral palsy is gearing up to file a lawsuit against her school district, because a special education director is saying her little girl can't use her walker. Pick your jaw up off the floor and read on.

LaKay Roberts, who's 5, uses her walker to, er, walk. You know, as kids with CP often do. She's been using it for three years, and attends Kings Manor Elementary School in Kingwood, near Houston. Occasionally, she also uses a wheelchair.

Her mom, Kristi Roberts, says that weeks ago the school district, New Caney ISD, told her that LaKay could no longer use her walker at school. Kristi taped a meeting with the district special education director, Gary Lemley; she uploaded part of it to YouTube. An excerpt:

Kristi: "Why can't she use a walker?"
Lemley: "We don't feel like it's safe any longer." [LaKay had fallen in the parking lot when her walker collapsed, while she was with her mom.]
Kristi: "How many kids fall down at recess? Do you make them take their shoes off and buy new ones?"
Lemley: "No, ma'am."
Kristi: "OK!"
Lemley: "They're not using walkers."

Up until this part of the video, I was thinking the special ed director was being a blockheaded bureaucrat, perhaps concerned that the district could get sued if LaKay hurt herself on the premises. Obviously, if LaKay's walker is collapsing it needs to be fixed, although barring it seems excessive (and hel-lo, discrimination). Here—listen for yourself (and check out how adorable LaKay is):

The part of the YouTube video that convinced me something was seriously wrong with this guy was when he said to Kristi, "You're not concerned about LaKay."


Passing judgment on the mother's concern for her child isn't just crossing a line, it's bulldozing a line. 

If you have a kid who has cerebral palsy or any gross motor challenges, you know just what sort of efforts and prayers go into your child's ability to take steps, let alone walk. I will never forget the sight of Max in our living room taking his first steps in his walker, the same kind LaKay uses (a Kaye Posterior Walker). They're the steps I never thought I'd see after doctors had pretty much knocked the hope out of me. 

The walker enabled Max to learn to walk independently, just as it is enabling LaKay to move on her own and strengthen her muscles. That child has every right to use a walker in school to get around, same as any kid has a right to put one foot in front of the other and go.  

Kristi Roberts doesn't have the money to sue but I can almost guarantee that as the story gets attention, some lawyer (if not many) will offer to take the case.

Here's where you can send the superintendent of the school district an email, urging him to reconsider.

I wish this mama strength and power to fight for her child. 

It is a shame this is a battle that has to be fought.

Update: Caught up in this story, I neglected to mention that today is Cerebral Palsy Awareness Day—and obviously, there is much awareness still to be raised. If you're new here, check out my CP Awareness Day post on why my son is not a tragedy. Meanwhile, after reading this Kristina Chew at Care2 set up a petition asking the district to let LaKay use her walker. You can sign it here.

Saturday, March 24, 2012

A special needs equipment registry, a cool book club and other Stuff Worth Knowing About

A registry for special needs equipment: Tadpole Adaptive recently launched a registry where parents can register for adaptive equipment (everything from gait trainers to car seats), and then friends and family can contribute as they please. Maybe not quite as fun as registering for wedding china but, er, so much more useful.

A great book club for kids (and grownups)! I recently got to try out Just The Right Book, a personalized subscription service for kids and adults. And it is very personal—you fill out a form about your child's reading preferences, TV/movie/video game faves and general interests. The club is run by a popular indie bookstore, R.J. Julia Booksellers; once they have your info, a smartypants staffer chooses good books for your child and pops them in the mail. I liked that the kids' book selections weren't the expected choices. Max got A Friend For Dragon (which he liked) and The Astonishing Secret of Awesome Man (I thought it was cool, he was lukewarm). Sabrina really enjoyed the two chapter books, Junonia and Clementine. If for any reason the book doesn't work, you can send it back and exchange it, unless you're lazy like I am. You can pick from monthly, bi-monthly or quarterly subscriptions. They're offering Love That Max readers a 10 percent discount; use promo code FF12.

A water bottle for kids who have trouble holding cups: One of Max's OTs recently got him this Vapur "anti-bottle" as a gift because 1) It's purple 2) It's easy for him to hold and 3) It's purple. They come in all colors, they're durable and BPA-free, and they're $9.99. Check them out here!

Will you send a get-well card to a cute kid? Javier, a five-year-old with cerebral palsy, recently had bilateral hip surgery, tendon releases and casting; he'll be in recovery for eight weeks. "It's going to be a long process," says his mom, Brenda, "but well worth it if he feels the difference." She told me that Javier loves getting cards in the mail, and would be really psyched to receive some to help pass the time. Mail them to:
Javier Ortiz
3571 Fort Meade
RD #518
Laurel, MD 20724

Step away from this screen! Got this tip from Real Simple, which is always packed with news to use: If you stare at your computer screen a lot, sign up with Protect Your Vision; every 20 minutes it'll darken your screen for 20 seconds, giving your eyes a rest.

Something to make you seriously happy: Reader Laura, who blogs over at One Family, Many Lives, recently shared this story. In February Emily, an 11-year-old girl with autism, was watching a Mardi Gras parade in New Orleans when a drunk guy standing nearby verbally attacked her. "The retard is making watching the parade a challenge," he remarked. Emily left in tears. Reading the post by her mom, Amy Mueller, on the incident will make your blood pressure soar. Reading about the city's reaction to what happened will leave you seriously inspired. Here's the video:

And from my other blogs:

On Is raising a kid with special needs making you broke?

On 11 totally shameless mom habits

Happy weekend!

Kitty pic/Still Burning

Friday, March 23, 2012

9 best things to do for a kid with cerebral palsy (that don't feel like work)

What are your best tips for kids with cerebral palsy? That's what I asked an amazing pediatric therapist in honor of National Cerebral Palsy Awareness Day, happening this Sunday March 25. Stacy M. Menz, based in the San Francisco Bay area, has worked  with hundreds of kids with CP. She blogs at Starfish Therapies (a great blog, check it out!) and she's a columnist for PediaStaff. I know we all already have more than enough therapy to do with our kids (understatement alert!); what's genius about Stacy's suggestions is that they are basic lifestyle ideas you can easily incorporate into your days. And you're going to love the part where she suggests giving yourself and your kid breaks!

When I sat down to write this, I thought it would be a breeze. Boy, was I wrong. Each item seemed to morph into many items and then I’d realize I still forgot something that I really wanted to share. Writing this list, while thinking of all the children I have seen with CP over the years, made me really appreciate the differences in each child with CP I have met. I know every child with CP is different, but I have tried to make my top points applicable to all!

1. Avoid w-sitting. This is the number one things I tell almost all of my families. The topic of w-sitting tends to bring up a lot of controversy usually because parents have sat this way themselves and have not noticed any detrimental effects. Kids who have CP often sit this way because it provides them with a really stable base of support allowing them sit independently. However, that comes at a cost. W-sitting will also limit and hinder their ability to develop trunk strength, trunk rotation, hand preference and independent movement in and out of sitting. Tis position also encourages hamstring tightness, hip and femur alignment issues, and poor posture. Instead of w-sitting work with your therapists to find some alternatives ways to sit independently as well as work on other activities. 

2. Give kids time to be kids. Kids with CP are often so scheduled with therapy appointments that they don’t have time to be a kid, goof off, and do the things other kids do. Give them unstructured play time with their peers or siblings or even with you. Let them guide the interaction and see where it will lead.  The best part is that usually these unstructured moments are just as therapeutic as all the structured therapy. It provides them a great opportunity for them to work on integrating the skills they learn in therapy and generalizing it out into their day-to-day environment.

3. Maintain range of motion early. Maintaining range of motion at various joints in the body can be a challenge when a child has a diagnosis of CP, especially as they grow and get older. With each growth spurt their muscles can get a little tighter and they lose just a little bit more range. This is true for both kids who have low tone and kids who have high tone. Depending on the severity, decreased range of motion can affect your child’s ability to move, or even the ability to maintain your child’s hygiene.  Start early and get into the habit of stretching your child or encouraging a multitude of positions. It’s a lot easier to maintain their range of motion than it is to get it back. Some areas to pay attention to are your child’s spine, hamstrings, ankles, hands, and hips.

4. Don't be afraid to take therapy vacations! Its very easy to get caught up in the more-is-better mindset, but at the same time giving your child a break every once in a while is good for them. It allows their bodies and brains a chance to take all of the skills and pieces of skills that they have been practicing over and over and bring it together in a way that ‘clicks’.  In addition it gives their bodies time to rest a bit.  Think about training for a race, taper days are included in the work out program so that your body can recover; well kids need some recovery time as well!  I often find that after a child comes back from a vacation or a break they will move up to the next level of whatever skill they have been working on.

5. Know that tone and strength are different. Many kids with CP have altered muscle tone. This can be high tone, low tone or mixed tone (a combination of high and low). Low tone is a little easier to see the underlying weakness and therefore strengthening low tone muscles tends to make sense. High tone is a little more challenging because the muscles tend to be "turned on" and stiffer already, so strengthening seems counterintuitive. The reality is that under that high tone, the muscle is weak and by strengthening the muscles, it can help the child to regulate and have some control over their tone.  Overall, strengthening muscles for kids with CP is important because the strength is what provides them the means to increase their function.

6. Core strengthening is important, too! All strengthening is important—however, the core is the foundation that allows kids to move and to function. The more stable they are in their core the more function they will be able to achieve. A strong core is able to react to changes in balance, sit up tall for increased attention, improve breathing, vocalization and eating, enhances fine motor control, and is involved in almost any activity or function that you want your child to master.

7. Promote independence. Encouraging your child’s mobility and providing them the resources to have independent mobility can be a fine line to walk. Many kids with CP are reliant on their parents, caregivers and aides for mobility and/or interaction. Providing your child a means of independent exploration and mobility allows them to explore their environment, interact with their peers, promote self reliance, and enhances cognitive skills. Providing them a means for independent mobility can happen in many ways. It can be power mobility or an assistive device, or it can be teaching them self directed behavior so that they don’t need to rely on you for step by step cues on what to do next. Just because you provide them with assistive devices or wheelchairs doesn’t mean that you have to stop working on progressing their mobility without the assistive device. In fact, a lot of times gaining independent movement in an assistive device can help foster the desire to move and thereby increase their self-motivation. In addition, let your child try tasks independently even if its messy (like feeding) they feel a sense of accomplishment when they get to do things on their own.

8. Mix harder stuff with easier stuff. Think about when you are learning a new skill, how often do you have to practice it until you master it? Quite a bit, I’m sure. During that time required for practice, it’s energy-consuming both physically and mentally to learn the task. For kids with CP, every new skill requires exponentially more practice and more energy than when we learn something new. So what may seem simple to us—such as walking across a room, or eating a meal—can be a workout for a child with CP. But with practice and time, these challenging tasks will get easier. Don’t give up when something is really difficult; try mixing it in on a regular basis with easier activities to prevent frustration for both you and your child. For example, if I'm working on walking with a kiddo and it's hard for them, but they are good at standing or crawling I'll have them practice walking for a bit and then stand at their destination to read a book or play with a toy or use the iPad and then if they want they can crawl back to the 'starting line' where we started practicing walking and try again. This will provide them with practice of a challenging task and give them a rest (mentally and/or physically) while successfully completing another task.

9. Encourage your kid to be active every day. Kids are meant to be active and being active promotes a healthy lifestyle. However, many kids with CP have the tendency to have poor fitness as a result of their challenges with movement. Encourage this by finding ways to get them active daily.  It doesn’t have to be structured: Spend time at the park, go in the water with them, make up games at home, or see what activities your community offers. Regardless of your child’s ability to move, there are ways they can be active to promote their health and, most importantly, have FUN!

Wednesday, March 21, 2012

On the road of special needs parenting


"Eeeyah yah ah eeeyah ah ah AH!" says Max.

I'm driving our minivan, and Max is babbling in the backseat. I listen, happily, occasionally peeking into the rearview mirror to watch. I am not sure what he's saying, but there's intonation there and he sounds like he is having the most awesome conversation with himself. He seems to love the sound of his voice.

I sure do; for years, I never thought I'd hear it.


Max is 18 months old and I am driving him to aquatic therapy, one of the 12 sessions of therapy he gets every week. My boss lets me work at home one day a week and on Friday mornings, Max and I head to the pool at a local children's hospital. He doesn't like it so much, but the warm water helps relax his stiff muscles.

"AH!" says Max from the back seat. "AH! AH!"

I am astounded. Max barely makes any sounds at all, none of that babbling I've heard from babies. The stroke he had at birth caused some serious brain damage. His brain is not like other kids'. That, I know. But I so want him to babble.

I am giddy. This could be the start of the babbling. He is so going to prove those NICU doctors wrong, especially the grim-faced geezer who told my husband and me that we could sign a Do Not Resuscitate if we wanted to.

For years afterward, Max doesn't make a single sound in the back seat.


"Max, do you want to get ice-cream later?" I ask from the front of the car.

"Eeeyah!" says Max. ["Yeah!"]

I think that perhaps "Eeeyah!" is one of the best words ever. It's Max's version of "YES!" and "HELL, YEAH!" He says it so enthusiastically every time and more importantly, he says it. He has, of course, also mastered "NO." He likes to say it emphatically: "Noooooooooo." It was Max's first word.

I never knew "No" could be such a welcome word.


I've just come from an appointment at a doctor's, and I have to pull over to the side of the road because my eyes are full of tears. I am tired. Tired of spending all my free time with therapists and doctors. Tired of the hopelessness and despair and thinking that my life will never be OK again. Tired of not getting to just enjoy my cute toddler with the chubby cheeks, bright eyes and big smile. Tired. I sob for a while, Max sleeping in the back seat as cars whiz by, and then I pull out and drive on.


"Arr wah!" says Max. We've just passed a car wash, one of his favorite activities in the whole wide world.

"You want to go to the car wash?" I ask, rhetorically. Because I know the answer.

"EEEYAH!" says Max.

"How many times do you want to go to the car wash?" I ask, again knowing the answer full well.

"Oooooh," says Max. Two.

I love talking with my boy. We go through the car wash twice.


Dave is driving and I am sitting in the backseat with Max. He's three. I'm reading that Dr. Seuss book Hop On Pop to him.

"Hop!" I say to Max. "Can you say 'hop?'"

Max looks at me.

"Ha," I say. "It sounds like that! Ha, ha, ha. Can you say 'Ha'?"

Max looks at me.

My heart slumps. Nothing's working—not all the speech therapy, the flash cards, the endless talking to him. The speech isn't coming. Not even sounds are coming. I put the book down on my lap and stare bleakly out the window.


I'm at home and Dave calls from the car, on speakerphone; he and Max are out running errands. I hear Max in the background, babbling. Dave and I talk, and he hangs up. Then he calls back.

"Max wants to say hello," he says.

"Ohmmmy!" I hear. "Ohmmmy!"

It is the most beautiful word ever.

If the doctors could have told me back when Max was a baby that at 9 years old he wouldn't be fully able to speak, I would have been out of my head with sadness. A 9-year-old who couldn't talk? A 9-year-old still babbling?  

Now, I am only grateful. I'm thrilled that Max has the desire to communicate, thankful for his progress and ebullient to hear him playing with sounds. No matter what lies down the road, I know he will be fine... and so will I.

This is exactly what I want to tell moms who are lost in the fog of grief: It will be OK. Whether your child talks as you consider talking or does it in his own way or doesn't, whether your child walks as you consider walking or does it in his own way or doesn't, whether your child learns as you consider learning or does it in his own way, you will both be OK.

No matter how much pain and despair you feel now, slowly but surely you will get to this place called "acceptance." Because as your child develops, your heart and mind will progress, too:

You will be less sad. Even though at times the hurt will still come your way, it won't be as intense as it once was.

You will quit peering into the rearview mirror of what-might-have-been.

You will stop constantly worrying about the delays and missed milestones and realize that kids with special needs travel at their own speed. There is no race.

You will stop freaking out about what lies ahead and learn to see the wonders of your child.

This is the road you will travel as the parent of a child with special needs. And things will get better as you go along. So much better.

That, I promise you.


Tuesday, March 20, 2012

Max needs a driver's license. Plus, potty-training armageddon is near

Last Sunday, Sabrina and I were cruising around. She had strep throat, and I took her out for ice-cream because of course that and antibiotics are the best possible cure, but mostly Mud Pie ice-cream.

My cell rang; it was Dave.

"Can you come pick us up?" he asked.

Max had decided to pedal his tractor into town. Mind you, it's a good half mile from our house. And then he kept right on going past town. He was showing no sign of letting up, and Dave figured he was going to run out of steam at any second.

The tractor, circa 2009

I found them. Max didn't look very pleased to see me. In fact, his exact greeting was "Noooooooo!" He didn't want to stop. We hauled him into the car, looking to all the world like we were kidnapping him off the street, and then Dave told me about the excitement I'd missed.

Max had decided he was driving not a tractor but a REAL car. And he tried to drive smack in the middle of the street, along with the other moving vehicles. Dave finally convinced him that his plastic John Deere kiddie tractor is not an actual car.

Then Max decided he needed to park his fake real car in a parking lot in town. He drove into a spot and hung out as a policeman watched, smiling (evidently, idling in a plastic car is not yet considered a violation in our town). Some guy drove up and waited for the spot; Dave finally lured Max away with the promise of a milkshake.

So, I'm thinking of getting Max a new set of wheels, and it's all about bribery. We are going to immerse ourselves in potty training in two weekends. As in, we're dedicating an entire weekend to staying home and being all potty, all the time. No Pull-ups, just underwear and lots of drinking (water, not beer, although I might need a couple of glasses of wine). Plastic shower liners on the floor. Plus some amazing, absolutely irresistible prize-bribe. Like this:

It fits kids up to age 7 but since Max is well under the weight limit of 65 pounds,  I'm figuring he'll be fine. So what if we have to take out a second mortgage to pay for it. If it inspires Max to go potty, it will be worth every cent.

I just keep picture Max in it, jetting away from us to, like, Florida.

But at least he'd be potty trained.

Monday, March 19, 2012

Dealing with the invisible disabilities of preemie babies

This guest post is from Nick Hall, an amazing father who's behind Parents of Preemies Day; the first one is happening this Friday, March 23, a day of recognition for the parents of premature babies. Every year about 13 million babies around the world are born prematurely—that's 10 percent of all births. Nick and his wife, Jennifer, founded Graham's Foundation in 2009 in memory of their son. The foundation sends care packages to parents during their stay in the NICU; its website provides a place to share stories and find support.

My daughter, Reece, and my son, Graham, were delivered on Thanksgiving Day 2006 by emergency C-section. They were 25 weeks and three days gestational age—only a little more than halfway through a normal pregnancy. My wife was extremely sick. I was scared for her and scared for our babies. They were essentially still fetuses, not yet ready for the world outside the womb. Graham was with us for only 45 days. Reece held on, overcoming more than my wife and I would ever have imagined possible.

 Jenn and Reece, 2 months old

As my wife and I coped with Reece's four months in the hospital and the realities of prematurity—going on and off a ventilator, brain bleeds, infections, surgeries—our friends, relatives and coworkers realized sensitivity and understanding were called for. One wonderful friend brought us home-cooked meals every week. Another walked our dog on a regular basis. Once we made the transition home, however, we discovered that the same level of sensitivity wasn't always easy to come by. 

We knew that keeping Reece away from the outside world was in her best interests, so common illnesses like colds wouldn't interfere with her ability to grow and get stronger, but it was difficult. As much as you'd like to believe that people will understand completely, they didn’t. People literally told us that Reece needed to be "exposed" to germs to strengthen her immune system without understanding how much that might set her back (or worse).  

While my wife and I are blessed that our marriage stayed strong, it wasn't easy and other relationships were tested. Under normal circumstances, we would have focused an immense amount of time on our children, but Reece's unique birth and health circumstances meant we were focusing almost entirely on her needs. People in our lives didn't always understand that sometimes what we needed was space. Not everyone was sympathetic or even considerate when we kept our distance.

Reece developed hydrocephalus as a result of her brain bleeds and today, at age 5, she needs a shunt to help fluid in her brain drain properly. You can't see it but you can feel it. One side effect is that she gets migraine headaches and doesn't have the ability to go-go-go like her peers, even though she wants to. We have to make sure she has body/mind breaks throughout the day or we know that she will end up getting a migraine at the end of the day. Sometimes that means missing out on fun. In the beginning, there were friends of ours who didn't get why we were holding her back. In some cases, it took a lot of explaining.  It often looks like we are overbearing, when in fact, we would like nothing more than to let her go-go-go.

Reece is tall for her age, so she fits in with other kids in her class, though developmentally she needs extra time to catch up to them. Because of that, we're delaying kindergarten. My wife has had to deal with judgments from others who only see a tall, seemingly healthy girl—not a preemie.

Many of the lasting effects of prematurity, like so many other challenges children with special needs and their parents face, are often invisible. Of course, sometimes the effects of prematurity on families are obvious: A toddler in leg braces. A father who can change a feeding tube with his eyes closed. Thick glasses on a three-year-old. A mother who gave up a career because her daughter needed a level of care that daycare couldn't provide. More often, however, the lasting impact of prematurity on children and families simply isn't obvious at a glance—sensory issues, behavioral issues, autism spectrum disorders, and weight and growth issues. How often do people interpret common effects of prematurity as somehow being the fault of parents?

There are those who might consider the invisibility of many of the effects of prematurity a blessing, children who look in every way average have one less burden to bear. But parents of preemies know that the invisible special needs can become the root of misunderstandings that can strain and even irrevocably damage relationships.

After my family's experience with prematurity, I vowed to do what I could to help other parents of preemies survive all aspects of prematurity, including the isolation and misunderstandings. Part of showing the world that prematurity doesn't end when a family leaves the NICU and that the effects of prematurity can't always be seen is showing the world the real faces of prematurity. That's what Parents of Preemies Day is all about. We're asking parents of preemies to share their stories on our Facebook page to become a part of our Parents of Preemies Day banner that will be unveiled on Parents of Preemies Day, showcasing all of the pictures of parents and their preemies and their messages of hope, resilience, and miracles.

Sometimes, combating the misunderstandings that result when a health issue can't be seen is as easy as sharing the reality with the people around you. If you know the parent of a preemie or someone who knows a family coping with prematurity, please share Parents of Preemies Day with them. With your help, we can open people's eyes to the invisible effects of prematurity.

Friday, March 16, 2012

Last weekend, we went to Hawaii

OK, so technically we were at The Philadelphia International Flower Show 2012, but this year's theme was Hawaii and it was just like the real deal. (And I know, because I've been to the Big Island!)

All of us love road trips, we had an amazingly fun weekend. The Flower Show and VisitPhilly hosted us, including a stay at the lovely Loews Hotel Philadelphia that was a block away from the show's home, The Pennsylvania Convention Center. Dave loved that it's also a block away from Reading Terminal, an incredible indoor market and food hub.

Philly's flower show has been going on for 183 (!) years; it's the oldest, largest indoor show of its kind. Recent themes have included Springtime in Paris, Bella Italia and Passport To The World. It's held in early March; exhibitors came from around the country (plus the Netherlands and Ireland) to show off horticulture and landscape designs, and it was massive. Max ventured in but then got sensory overload, so he and Dave headed out for a walk and Sabrina and I explored.

"Islands of Aloha" was a mix of 46 exhibits, including fantasy rock gardens, a beach wedding, peaceful mountain streams and tropical retreats that made me seriously regret not living in Hawaii. There were expert talks, designer studios, a flower shop. It was breathtaking from the second we walked in.

Here's Sabrina in the entryway "orchid wave," which showcased more than 2000 of the flowers in a glassy enclosure that made you feel as if you were standing beneath crashing waves. Afterward, you walked into a tropical wonderland, including a 25-foot-high waterfall splashing down onto a garden of exotic flowers and plants.

A spectacular light show on the side of the tiki hut.

A lovely little escape (if you have $100,000 to spare). Idea for next year's flower show: Invite guests to sleep over!

Good-looking succulents

One of my fave botanical displays

This creation won a 1st-Prize Blue Ribbon. In judge-speak, "A well executed theme with the pearl anchoring the shell."

Sabrina asked the attendant if we could eat dinner here. He said yes, although we didn't take 
him up on it.

A cool cactus. I told Sabrina about the time, as a child, when I placed my hand over Aunt Jenny's cactus plant and my Dad had to pick out all the needles. She thought it was a laugh riot. And then she proceeded to put her hand right over the cactus. Thankfully, I grabbed it away before she touched it. One word: KIDS.

Retro car and surfboard

Meet some lovely Dwarf Witchalder. I thought they were magical.

Hanging in the Bonsai area. They're my favorite plants, but I'm unable to keep any alive; someday, my obit will most likely list "bonsai killer."

A family lounge, with flower-making, coloring and other activities for kids. The concourse outside the exhibit area also had a "Man Cave." I dared not go in.

Max, meanwhile, had a blast exploring Philly by trolley via Philadelphia Trolley Works, part of Big Bus Tours (the company also offers double-decker buses). A guide narrates the 90-minute trip, which takes you past various glorious statues (including Rocky, of course), the massive Eastern State Penitentiary, the home of Betsy Ross, the Liberty Bell, the Rodin Museum, the historic district and the site of Benjamin Franklin's first house.

Next day we hit The Philadelphia Zoothe best one we've ever visited. It's America's first zoo (Philly is history central!), but it felt all modern. We saw animals we'd never before seen like this dude, a douc langur.

One of the best parts: how close you got to the animals (er, not the lions and tigers).

Guess who loved the train? (Hint: not Dave.)

I stood there and stared at this guy for 10 minutes. 

We also stopped by The Franklin Institute, a super-interactive place to explore everything from sports to space. Highlights include a giant two-story heart, planetarium, IMAX theater and 4D flight simulator. We did the Giant Mysterious Dinosaurs Exhibit, open through April 15.

Sabrina works a water wheel in the KidScience zone.

Max nirvana: the Train Factory interactive exhibit. It has a working 350-ton locomotive where kids can feel the heat of the steam, hear the sounds of the machine and find out what it takes to drive one (potential Max future career).

Riding that train! Max went on it five times (it inches forward and back), and got to toot the horn. 

I totally recommend planning a family trip around The Flower Show. Next time, we'll go on a weekday; I hear it's relatively quiet after 4, a good time to bring kids who don't like crowds. The March 2013 theme: the design, gardens and landscapes of England. Which will surely make me regret not living in England.

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