How Sabrina describes her brother

We're at the playground. Max is turning a steering wheel on a jungle gym; Sabrina's standing nearby and talking with another little girl.

Carly: "Why doesn't Max talk?"

Sabrina: "He needs special needs."

It's a start! She'll get the wording right soon enough; I liked that she said it so matter-of-factly. I know that as she gets older, she'll get lots more questions about her big brother, and I hope that she'll answer them in the same friendly, straightforward way.

Sesame Place and kids with special needs

Saturday we were at Sesame Place, along with everyone and their mother. Crowded, but fun! The kids weren't into the character meet and greets, though they loved the water activities, the rides and the big parade at the end, complete with a gigantic plastic birthday cake Max seemed eager to eat.


Max's fave was Ernie's Waterworks, especially because he thought a lot of the fountains and geysers looked like a car wash (the obsession lives on!). Afterward, we floated in big tubes along "Big Bird's Rambling River," Max sitting on Dave's stomach, Sabrina in a tube next to me. I couldn't believe it—15 whole minutes of relaxation.


Then Max played the duck game, and attempted to walk off with one, only a Sesame Street SWAT team descended upon him. OK, they didn't. The lady at the booth was very nice.

Actually, everyone at the park was super helpful. At lunch, the cafés were crowded and Max couldn't deal, so I asked a park staffer if there was anyplace quiet to eat. She walked us over to a table at Captain Ernie's Bistro, then had a supervisor come out of the jam-packed eatery, take our order and deliver it. Wow. We were also able to get a special pass for Max, so we avoided the long lines that he can't tolerate. We did wait on the shorter ones; it is a fine line between working with Max's limitations and teaching him that he has to wait his turn, too.


Max and Dave went for a spin.


Sabrina jumped around...


...then attempted to climb Cookie Mountain. Problem was, I'd neglected to bring along an oxygen tank and proper climbing gear, so she failed to reach the summit, though we might turn her attempt into a major motion picture, I'll keep you posted.


Biggest surprise of the day: Max got in a pit with sandbags, "Monster Maze," and fearlessly pushed his way around. I think he might have a future in boxing. Seriously. Float like a butterfly, sting like a bee, buddy!


I love how Max recognizes his name. "Why is Max's name always everywhere?" Sabrina wanted to know.

Saturday night, we crashed at the Sheraton Bucks County Hotel, five minutes away from the park. I am a total sucker for sleeping in hotels, always happy to. As with the other major hotels in the area, there's a shuttle bus to Sesame Place so you don't have to deal with parking. Also, the bed was ridiculously comfortable.


On Sunday, we drove a half hour to New Hope, Pennsylvania. It's mostly an adult place to play (shopping, antiquing, nice restaurants), but we took the kids on a ferry boat ride and they didn't want to get off.


The ducks enjoyed Sunday brunch, courtesy of Max.

Another great trip, especially because Max was so open-minded about trying new things. It took a little while for him to warm up to Sesame Place but once he did, he was everywhere.

Up next: We hike Mount Everest! Yeah. Actually, next weekend I'll mostly be at BlogHer, a whole other kind of adventure.

Wouldn't it be nice if everyone could enjoy life this much?

We recently got the kids new swings. Sabrina's came from Toys 'R Us, it's the Little Tikes Cozy Swing and costs $24.99. We needed to get an adaptive one for Max that offers him more support and let me just say, some of those adaptive swings are INSANELY priced. We're talking $600 bucks insane. We found this one for the relative bargain price of $109.95 from Achievement Products.

This is the sound Max makes when he is bubbling over with bliss. To me, it is the best sound ever. (Second best sound: Mendelssohn's Violin Concerto in E Minor.)

Of special note: See how nice and clean the ground to the left of Sabrina, inside the playset, looks? That is because it's where the poison ivy was, the one I valiantly blockheadedly cleaned out in short sleeves. I just had to point out the scene of the crime. I still have phantom itching.

BTW, thanks to you guys (and my relatives, I am sure), I am one of five finalists for Best Parenting Blog on Parents Connect! I'm proud, but especially proud to have been the only blog out of the 50 nominated about kids with special needs. I wish there were more of us in the mix, but I am glad I am there to represent us all. The voting is open until Sept 1, and you can do it daily. Feel free!

The kindness of strangers to kids with special needs

Seven years into having a child with special needs, I am still amazed by the kindness of strangers—those little courtesies and sweet gestures people extend to Max when they realize he is disabled.

It took time for me to reach a point of gratitude. Back in the early years with Max, I'd get unnerved when people did nice things for us. This mostly had to do with the fact that I hadn't yet accepted that I had a kid with challenges, and so it was always a shock to the system when other people noticed:

Oh. I have a child who looks like he needs help.

Oh. I have a child who really does need help.

Oh. I am a mom of a kid with special needs. How did this happen?

But all last week, during our vacation at the beach, I was deeply grateful for the kindness of strangers.

Grateful to the head of the day camp who took extra-special care of Max.

Grateful to the woman on the boardwalk operating the car ride who let Max go around again and again (and again and again).

Grateful to the woman at the zoo operating the popular kiddie train ride who let Max go around twice.

Grateful to the woman at Six Flags Great Adventure who was manning a bus ride. Max was too afraid to get on it; all he wanted to do was help open and shut the doors after people had gotten inside. And she let him, thanking him profusely for helping.

Grateful to the waitress at the restaurant who pureed meatballs for Max and then twice took back his milkshake to thicken it up so he'd have an easier time drinking it.

Grateful to the woman at the miniature golf course who let Max play for free.

Grateful to the maintenance guy at the resort where we were staying who was walking through the lobby carrying a box of pizza; Max ran up to him and gestured at the box. And damn if the guy didn't open it up and hand Max a slice on a plate (and then Sabrina, too, after she charmingly wailed "I WAAAAAAAANT SOME!!!!").

Grateful to the security guy at the resort who let Dave drive Max around in his golf cart in the underground garage (I think Max is experiencing severe ride withdrawal this week).

Sometimes, these gestures give me pause. I don't want Max to feel spoiled or entitled, and I don't want other kids to resent him. There was another little boy riding that train at the zoo who wanted to stay on it as well, only his mother made him get off. He glared at Max, though Max didn't notice.

Still, at this point in Max's life, I am OK with letting him get the kid-glove treatment (within reason). These gestures make Max happier. They improve the quality of his life and make mine easier as well. They also make me feel supported in this tremendous responsibility I have of raising a child with special needs. Whereas before the recognition from strangers was bittersweet, I have grown to appreciate it. I feel less alone.

It doesn't take a village to raise a child with special needs—it takes a world.

Why I can't stop repeating myself. Repeat.

Max likes to hear stuff over and over and over. It's his way of processing information, his neurologist once told us. I think it's also comforting to him. And perhaps, just perhaps, he has a secret plan to drive us wackadoo.

While there are plenty of times when I ask open-ended questions to encourage him to talk and communicate—q's like "Where do you want to go today, Max?" or "What do you want to eat, Max?"—he most enjoys conversations that are as scripted as comedy routines. Who knows, maybe someday we will take our show on the road, though we might need to work on our material.

Me: "Max loves purple!"
Max: "ESSSSSS!!!" ("YESSSSSS!")
Me: "And you love spaghetti!"
Max: "ESSSSSS!!!"
Me: "And you want to go to the car wash soon!"
Max: "ESSSSSS!!!"
Me: "And you would like to eat spaghetti at the car wash!!!"
Max: "ESSSSSS!!!"
Me: "And you would like to go through the car wash TWICE!" (Something which Dave has actually done with him.)
Max: "ESSSSSS!!!"
Repeat.

Me: "Max likes going to the beach!"
Max: "ESSSSSS!!!"
Me: "And you would like to ride a plane to the beach!!!"
Max: "ESSSSSS!!!"
Repeat.

Me: "Max loves to sleep in his big boy bed!"
Max: "ESSSSSS!!!"
Me: "And you like to sleep with your purple pillow!!!"
Max: "ESSSSSS!!!"
Me: "And you like to brush your teeth!"
Max: "NOOOOOOOOOO!!!"
Repeat.

Me: "Mommy loves Max."
Max: "ESSSSSS!!!"
Me: "Daddy loves Max."
Max: "ESSSSSS!!!"
Me: "Sabrina loves Max."
Max: "ESSSSSS!!"
Repeat.

Do your kids do this? What sort of things do they love to hear again and again?

I get a little irrational about head injuries

Tonight, I was hanging in bed with Max and Sabrina, reading books. It was twilight and rainy outside, and it was so nice to cuddle up with them and read the Olivia Forms A Band book Sabrina had gotten at the library. Then Max decided he wanted to look out the window. Sabrina ran to the other side of the bed; she wanted to help him down. And suddenly, before I could stop her, she grabbed his legs and pulled him off the bed. Max body-slammed onto the floor. It all happened so fast.

I shrieked and ran over to Max, who was sobbing. Sabrina started sobbing, too, because I scared the heck out of her.

Max cried for a good five minutes. Once he stopped, I peered into his eyes to see if his pupils were enlarged, a sign of a concussion. They seemed normal. I asked him to point to where it hurt, and when he gestured at his head I felt a little sick. Sabrina kept sobbing, and I also felt awful about having freaked her out. As I held Max I explained that I shouted because I got scared that Max was hurt, and that I knew it wasn't her fault and that Max was OK, and she calmed down. "Max, you're OK, you're OK," I crooned as I rocked him back and forth, fervently hoping that he really was.

After I put them to bed, I looked up The Mayo Clinic's list of concussion symptoms. I felt comforted seeing them, even though I know them well. I have called the pediatrician several times over the years when Max has fallen and hit his head. Ironically, he's tended to fall more often than typical kids because of his brain injury. Since his balance is pretty decent these days it's not as much of an issue but when he was learning to walk, he'd conk his head a lot. At one point, we had him wearing a helmet.

I got a little distracted because the Mayo Clinic site lists slurred speech as a symptom and I was like, um, that is what Max sounds like all the time. But then I scrolled down and they had the specific symptoms for head injury in children: listlessness, irritability, change in eating or sleeping patterns, loss of balance. So far, Max is OK. He went to sleep with his usual cheerful demeanor, although I keep checking on him.

I am still feeling shaky. Dave is away on business, so it's me and the kids. I just downed ten mini Toblerone chocolates in a row, straight-up stress eating.

I am not a person who typically freaks out during crises, and this I know because I have had to deal with two different seizures Max had, the first a gigantic grand mal when he was one-and-a-half that lasted even after he got to the hospital and the medicine they gave wasn't strong enough, the second a smaller one last spring. Both times I immediately dialed 911, told the dispatcher what was going on and Max's history, talked with the police when they got to the house a few minutes later. I handled it OK, though it was awful.

But tonight, the sight of my child potentially suffering a head injury unhinged me. Completely. It was as if, in a matter of seconds, the repressed fears I have about Max came out of their hiding spots in my head and amassed themselves in my chest into a ball of terror. My concern about a head injury isn't irrational—but the intense reaction it triggers is. I have a feeling this isn't uncommon among parents who have been through an NICU trauma.

I am off to check on Max again, poor little guy.

Date night

Saturday night. Dave and I are headed to a little Cuban restaurant we love. We pass by a packed outdoor cafe. "We ate there once, didn't we?" I ask.

"Yeah," says Dave. "It was right before Max was born. I hate that place."

"Why?"

"It brings back bad memories."

Oh.

"Honey, that was a beautiful time before Max was born," I tell him.

"Yes, but then we ended up in hell," Dave says. "It was catastrophic."

Dave hardly ever talks about the period when Max was born. So when I hear him say things like this, they take me by surprise. And they pain me. Dave is the most cheerful, easygoing guy I've ever met, and it still hurts to think back to how shattered he was during Max's two weeks in the NICU. I wasn't sure I'd ever see happy-go-lucky Dave again.

We drive in silence for a minute. Then Dave says,

"If I had known Max would turn out the way he did, I wouldn't have been so upset back then."

And we're quiet again. And we're headed to the little Cuban restaurant. And I know we're both thinking about how lucky we are.


Photo/M Bob

Top 20 Reasons Moms Of Kids With Special Needs ROCK

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

But wait, we're not done!
20 more reasons moms of kids with special needs ROCK

For a printable copy, e-mail lovethatmax@gmail.com

How I made peace with having a kid who has special needs

Ken, a thoughtful (and funny) writer over at Blogzilly who's dad to Bennett, wrote a comment yesterday that really moved me. It was in response to my flip post on what Max would say if he had more words. Ken wrote:

"I hope to be where you are someday. In my present state of mind I would be focusing on what my son can't say. Your post shows there is hope to be in a better place and instead have some fun with it and be in a better place."

This is something I've been meaning to talk about. Because here's the thing: I know I seem pretty well-adjusted. I am. I know I seem pretty upbeat. I am...now. If I had started this blog when Max was first born, or even a couple years later, this would be a very, very different blog. It would be a blog filled with worry, hand-wringing, and all sorts of dark thoughts. To some extent, it's taken the passage of time for me to get to this better place, but along the way I happened upon some things that helped:

• I talked about my worries and my grief. With friends, with other parents of kids with special needs, with people in support groups, with a therapist. Now we have blogs, but there's nothing like having a real conversation to get the trauma out.
• I found ways to savor Max. I've written before about how my fears for Max's future would sometimes overshadow the fact that I had a really cute, delicious baby. So I got into taking photos of him. Lots of photos. I'd order prints and meticulously put them in photo albums. I made photo murals and hung them around the house. I'd order photo calendars of Max for Dave and family. I had a photo gallery of Max in my office. The photos brought in the joy of having a child, the joy that can get so easily squashed by all the medical drama.
• I'd make myself remember that as sorry as I felt for Max, he wasn't feeling sorry for himself. He was perfectly content. He didn't know that he was having trouble picking up the toy car because his hands were tight from the cerebral palsy; he just knew to keep trying.
• I'd think about how much worse things could have been. This was a total shift in perspective, because for the longest time all I could think was, Why did this happen to us? Why am I the only one out of everyone we know to have a child who suffered such a catastrophe at birth? But when I'd consider far more awful things that could have happened, I'd suddenly feel a lot better about the present.
• I put together the best team of experts I could find. I researched doctors and talked my way into appointments, shamelessly throwing myself at the mercy of secretaries. I made sure Max had experienced Early Intervention therapists. If someone wasn't working out, I'd go to bat to find a replacement. I fought the insurance company to pay for more therapies. And we tried alternate stuff, too, like craniosacral therapy and hyperbaric oxygen treatment. I was determined to give Max every possible chance at succeeding in life. Taking action was helpful for me, too; I felt like I had some control over a situation that seemed wildly, and scarily, uncontrollable.
• I didn't beat myself up. Between all the therapeutic exercises experts gave us, I could have spent 24/7 working with Max. I did my best, and I refused to feel guilty about not being able to do every single thing. Putting all that pressure on myself would have only made me more stressed, and that wouldn't have done Max any good.
• I forced myself to quit paying attention to major milestones. No more looking at the developmental books, no more updates from BabyCenter. I was only torturing myself by comparing what Max should have been doing with the reality of his delays.
• I learned to celebrate small, everyday achievements.
• I also learned to hunt down the happiness. If I was bummed out, I'd get in touch with one of Max's therapists and talk about the good things he'd been doing. That always gave me a lift. A little wine never hurt, either.
• I finally got to acceptance. It came excruciatingly slowly because it kept head-butting with hope—my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."

And so, that's pretty much how I have gotten to this place. If you regularly read this blog, you know I still have the sad moments. I cry on occasion, including when I write posts like this that take me back to the early years. I still have a streak of denial; I have Photoshopped the drool out of photos. I have freakouts about Max's future. But I have come a long way, both in years and in my mind. I've learned. I've adapted. I've adjusted. I no longer see myself as a person who had a really horrible thing happen to her; I no longer see Max as a poor, unfortunate child.

I am a mom of a very wonderful kid who has some challenges, a kid whose smile heals me every single day.

If you have any words of advice to add, or you have a question you'd like to ask, please do.

If Max had more words, what would he say?

I was on a crowded train today and there was a little boy, about three years old, riding with his mom. An elderly gent struck up a conversation with him. Suddenly the kid said to the guy, "You have a big nose."

Everyone on our side of the car cracked up. It is not a usual occurrence to have a car packed with New York City subway riders congenially laughing together; typically, it's just one cuckoo guy cackling to himself as everyone avoids eye contact with him.

"Well, I never knew that about my nose!" the guy said, totally amused, and everyone laughed again.

As I stood there, I started wondering what sort of crazy stuff Max might say if words could easily flow from his mouth. This is not to say Max doesn't communicate in his own way; he most definitely, and gloriously, does. Through words he says, some very clear and some garbled, though I understand him; through signing; through his Dynavox communication device (he has phrases on it; someday, he'll form sentences).

It was just one of those reveries you sometimes have as the parent of a kid with special needs, wondering what another version of your child might be like. They're not sad musings. They're just...musings.

This is what I could hear Max saying:

"Mom, please get me only purple clothing from now on. Including underwear."

"Can we live on the Disney boat? Please?"

"I would like only purple dishes, too. Also, I don't think it would cost a lot of money to paint the house purple, you can use what's in my piggy bank. You can use what's in Sabrina's piggy bank, but maybe don't mention it to her."

"These ugly braces on my feet are cramping my style. Doesn't Prada make DAFOs?"

"Of course I am completely capable of doing the potty thing. I choose not to get fully toilet trained because, well, skip it. It's an existential thing and you wouldn't really understand."

"MOOOOOOOOM! I KNOW YOU ARE SNEAKING OMEGA-3 OIL INTO MY FOOD AND I'M NOT GOING TO TAKE IT ANYMORE!"

"Sabrina, if you don't stop chanting 'Max likes GREEN! Max likes GREEN!' in that snotty voice, I am not going to do fake-burp contests with you ever again. And by the way, I can burp so much better than you! But not better than Daddy."

"If we can't go on the Disney boat, can we just go on an airplane ride to someplace today?"

"Hey! How much does it cost to buy an airplane, anyway? Could it fit in our backyard?"

"Mom, I know you killed the ladybugs we were trying to breed. I forgive you but please, let us handle the next batch."

"I think it's OK to eat chocolate ice-cream for breakfast. It has calcium!"

"Suck it, Sabrina."

"OT and PT and speech therapy are fun and all, but how about we go out and get ourselves some cold brews?"

Weekend happiness is...

...going to the beach and getting Max a new purple bucket


...watching Sabrina swinging


...Max enjoying the water


...Sabrina riding on Dave's shoulders


...Max going down the slide


...Max on the swing


...Max trying a teeter-totter for the first time ever

...when your mom lets you pull your purple shirt from the laundry and wear it for the second day in a row.

What blissed you out this weekend?

Post replay: A Bill of Rights For Parents of Kids With Special Needs

Hi, peeps. We're on the Disney Wonder right now, so I'm sharing one of my all-time favorite posts, A Bill of Rights For Parents of Kids With Special Needs. If you have any to add on, share!


We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

For a printable copy, e-mail LoveThatMax@gmail.com.

It's Cerebral Palsy Awareness Day and hello, world, my child is not a tragedy

It's impossible to remember exactly what I thought of cerebral palsy before I had Max. I'm pretty sure I could only picture a person in a wheelchair, but I'm not sure. I didn't know anyone who had it. I had no idea it could be mild, and I certainly had no idea of the complications it could bring.

Then I had a child with CP.

The words "cerebral palsy" can sound pretty awful. They literally mean weakness (palsy) having to do with the brain (cerebral). The condition is caused by an injury to the brain sometime around childbirth. Max lost oxygen during birth, which is what caused the brain damage and resulting cp. Here's a good description of what cerebral palsy means from The Centers for Disease Control, although geez, how old is the photo of that little girl?!

Having CP basically means your brain doesn't send the right signals to your muscles, so they can be messed up (to use the medical terminology). There are four kinds of cerebral palsy: spastic, athetoid, ataxic and mixed. Max has spastic four-quad CP, so he has increased tightness in all four limbs, as well as his feet, torso and jaw.

I was shocked to discover just how much the CP messed with Max's ability to eat; the tongue, as it turns out, is one of the body's most hard-working muscles. Chewing and swallowing require all sorts of intricate movements that may not come easily to someone with CP. Max sure does love to eat, but food and liquid dribble out. The other main way CP affects him is that he has a fair amount of trouble using his hands. Manual dexterity is a challenge, particularly in his right hand (the brain damage is worse on the left side of his brain). His arms are tight, so swimming is not yet possible. And he cannot speak clearly, because of tongue challenges and because his brain isn't sending his mouth the right signals. He also has cognitive delays.

And then, there's the reality of Max. He is a really bright kid who's well aware of what's happening in this world (and who never lets his little sister put one over on him). He likes to learn, and picks up things quickly. The cp hasn't prevented him from walking or riding a bike. The cp hasn't prevented him from playing with trucks, coloring, downing ice-cream or doing all the other stuff little kids love to do. The cp has not affected his incredible determination, his spirit, his sunny disposition, his sense of humor, his fantastic attitude. Max doesn't yet know he has cerebral palsy. Someday, he will, but I'm not concerned it will change his perspective on who he is.

If you don't have a child with disabilities, the cerebral palsy may seem like a tragedy to you. I'm here to say, it isn't. Do I wish he didn't have it? Of course I do. But do I wish that I didn't have a temper? Yes. Do I wish that Dave didn't have such trouble listening? Yeah. Do I wish that Sabrina was more patient? Yes. We all have our weaknesses, and while Max's may be more involved and more obvious, they're part of who he is.

Cerebral palsy has not defined his life.

Were you scared of going for kid no. 2 after having one with special needs?

I've been e-mailing with a new reader to the blog, Janet, mom to an adorable 18-month-old boy who, like Max, had a stroke at birth. She asked the following, and said it would be OK if I answered her here so everyone could weigh in and share their experiences:

"Did you have anxiety about having another child? Or did you know it is what you wanted for your family? I think my son would be an awesome big brother. I did see a high risk pregnancy doc, they say what happened was a fluke and they don't feel my next pregnancy would be high risk. But the whole hospital experience etc. has me very scared."

I know how she feels—I had some anxiety about having a second kid. But my yearning to have another child overcame any concerns. I've always loved kids and definitely wanted at least two. I also wanted Max to have a sibling who would help him in life. And, less significantly but still important to me, I wanted to have a "normal" new-mom experience after what I'd been through with Max (that's Sabrina at five days old, above).

I didn't see a second pregnancy as much of a gamble. Max had a bilateral stroke, a relatively rare thing. It was caused by a lack of oxygen sometime during his birth—a human error, it was later determined. Max did have a contributing factor, two blood mutations that make him more prone to clotting. But those alone cannot cause a stroke, there has to be a trigger (in his case, the lack of oxygen). I went to a high-risk practice and felt secure in the doctors' hands. They put me on blood thinner, as a precaution. And I got lots and lots of ultrasounds.

Dave and I aren't superstitious types, but we decided to do things differently the second time around. So we found out the sex of the baby. The first ultrasound technician told me it was a boy—I'm still not sure what she saw on that screen. At the next ultrasound, I told the technician I was psyched to have another boy and after a few minutes she said, "Well, I'm pretty sure you're having a girl." When I called Dave from the appointment and said, "Guess what?" he answered, "IT'S TWINS!!!"

The only trauma I had during the pregnancy came in the form of the idiot neurologist who did a scan in my eighth month; we wanted to make absolutely sure Sabrina's brain was fine.

He obviously hadn't fully read my chart because as he glided the ultrasound wand over my belly, he said, "So, your first child had a stroke?"

"Yes," I said.

"What did the autopsy reveal?" he asked.

I burst into tears. The nurse, who knew me, gently said, "Her baby did not die."

I couldn't stop sobbing for five minutes. It was absolutely, excruciatingly horrible. Idiot Doctor felt bad and jokingly said I could punch him, which I briefly considered. After he left, the nurse took 3-D photos of Sabrina to console me.


Definitely Sabrina, with a very smooshed nose. Actually, she looked like she was itching to tell that doctor off.

So, Janet, what I say to you is go for another child (and no worries about Idiot Doctor, he's not in your area). It was very special to experience new momhood with Sabrina, I savored every moment. Having a sister has helped Max thrive (even when Sabrina's torturing him, she's at least teaching him to stick up for himself and inspiring him to open up his tight right hand to pull her hair). Having one typically-developing child and one with disabilities has made me a more balanced mom—I might still be one big ball of worry if I only had Max to focus on. Each of them made me appreciate the other that much more.

And, of course, the only thing better than one delicious kid is two delicious kids.

How about you—do you have concerns about having a second child? Or were you worried before you forged ahead?

Our kids' special powers

It started with purple, Max's new favorite color in the whole wide world. He assembled a bag of purple treasures.


Soon, our house was decked out in purple...


...down to the kitchen sponge.


Max now has three purple cars, two purple shirts, one pair of purple socks, one purple hat, one purple snow coaster and a purple partridge in a pear tree (OK, not really, unless we can track one down on ebay).

Lately, something funny's been happening. People around Max are getting sucked into his purple spell.


Our babysitter, Linette, and Max's occupational therapist, Nafeesa, started wearing purple tops.


Belle, a sweet teenager who reads this blog, saw this tree and snapped a photo because it reminded her of Max.


His teacher made him a purple horse.

[I bought purple underwear, but you'll just have to use your imagination.]


Another reader, Anji, excitedly informed me about The Purple Store—an entire store filled with purple stuff.


My friend Lauren came to visit and surrendered her purple sweater.

And reader Kate wrote to tell me that if I had another girl, I should name her Violet.

In a recent post a parent wrote that her child, like Max, has "special powers," and the words have stuck with me ever since. Our kids really do have special powers—powers to overcome physical difficulties, powers to change people's perceptions of kids with special needs, powers to spark people's excitement with their own excitement.

Whatever challenges our kids may face, their spirit shines through.

My new kind of happy: It's all about the small stuff

On Saturday, I took Sabrina to a birthday party for one of her friends, and noticed an adorable little boy wearing the kind of foot braces Max has. I started chatting with his mom in that instantly candid way you can be with other moms of kids with special needs. Within five minutes, as children around us painted and giggled and dashed around, she told me her son was a preemie, and had mild cerebral palsy. I told her Max had a stroke at birth and also had mild cp. We kept chatting. "I'm grateful for every thing he can do," she said.

I knew exactly what she meant, of course. I take nothing for granted with Max. Nothing. I mean, tonight, my homeboy and I were hanging in bed watching Hip Hop Harry, his latest TV obsession, and all of a sudden I noticed Max scratching his cheek. Only he was doing it with his pointer finger. This is a major deal for Max, to isolate his finger that way, since usually his fingers are held tight together.

It made me happy.

I've been thinking a lot about the topic lately since I'm reading The Happiness Project by Gretchen Rubin. It is an incredibly inspiring, engaging, funny, real, eye-opening book, based on Gretchen's popular blog of the same name. She spent a year testing out different research and theories on achieving happiness, boiling it down to everyday stuff anyone can do. It might be the most helpful book on the topic you'll ever read. It is that good.

Max has redefined what happiness means to me. Before he came along, happiness usually meant a big chunk of pleasure—a vacation, a promotion, buying my first place. Through Max, I have come to appreciate the little joys. Of watching him color, something he only got into this year. Of making him giggle when I chase him around the house. Of seeing his eyes light up when we're out and he spots something purple and exclaims, "UR-UL!" "UR-UL!" Of the wicked grin he gets on his face when he's teasing his sister (I know, it is so wrong of me to be happy about that but I can't help it). Of watching him struggle to try and do something, like pick up a toy, until he figures out a way. Of the beautiful mess he makes when he holds an ice-cream all by himself and eats it. Of the squeal he lets out when he's careening down our street in his jeep as I beg, "Slow down, Maaaaaaaax!!!!!!" (I think he's more amused by my pleading than by the speed.)

Obviously, kids have a way of making you appreciate the "small moments," as Gretchen calls them. But I think those small moments are even more bliss-inducing when you have a kid with special needs. Not that Max (or Sabrina) provide the only small joys I have in my life. Sunday morning, I got to take a long-ish shower; I blasted the shower radio and sang along to The Kinks' "Come Dancing," and that made me happy. As I wrote this I downed three chocolate-coated Oreos, and they made me happy. Then Dave walked in and gave me a neck massage. He gets happiness pointers for trying, but my knotted-up neck is a sorry excuse for a neck right now. Oh, and in case you're wondering, Hip Hop Harry doesn't make me particularly happy, though watching Max try to breakdance does.

So, my friends, here's to those mini bursts of bliss. What has your child done lately that's made you happy that way?

Who's more emotional about your child: you or your husband?

I was in Babies 'R Us recently to pick up some stuff for Max. It's not a trip I enjoy; when I'm there, I think about the fact that Max is almost 7 and he still needs baby-ish paraphernalia like Bibsters, cloth bibs, those plastic bowls with suction-cup bottoms.

The nice woman behind the checkout counter struck up a conversation about what a great invention the Bibsters are. She has a one-year-old, and I was sort of praying she wouldn't ask how old my kids were, I just didn't want to get into it. She didn't.

As I left the store, it occurred to me that I should just send Dave to get this stuff. He wouldn't think twice about it. He doesn't think twice about any care or help Max needs. I've mentioned before that sometimes, feeding Max stresses me out, part of which has to do with the fact that I get unnerved that my little boy has trouble eating. Not Dave. He cheerfully feeds Max all the time.

Sometimes, it feels like this disconnect between us, me getting all emotional about certain things, Dave being matter of fact. But that's also what balances us out.

What's the balance in your relationship? Who's the more emotional one?

Sometimes Max is bratty...and I like it

Congrats to the winner of the Pottery Barn Kids gift card: Kimberly, from Driving With No Hands. I hope you get your cute kids lots of cute stuff! I'm going to do a bunch of giveaways throughout December—treats for the kids and for you—so stay tuned.

This weekend was especially fun because Dave and I had a playdate. We snagged tickets to see a dress rehearsal of Saturday Night Live which takes place from 8 to 10 and is even better than seeing the live show (IMO). January Jones hosted; I don't watch Mad Men, so that wasn't a thrill. But Fergie and The Black Eyed Peas were the musical guests, and they rocked the house. Seth Meyers is very cute in person, I have to say. I think Dave has a crush on Kristen Wiig.

The kids had a good time, too, this weekend. Dave promised Sabrina a rip-off cupcake maker called Girl Gourmet—how annoying is that name?! What about Guy Gourmet? Let's teach men to cook from a young age! Yeah! Anyway, Dave got it for Sabrina last week, and the kids have been making cupcakes up the wazoo ever since. They'd make them in the bath, if I let them.


Sabrina making the cupcakes.


Taste-testing.


We made a special frosting mix with purple sugar for Max (note the purple shirt, and the purple cookie-dough scooper he's holding up above, he is still in the throes of his purple period). Sabrina did not like that Max got special frosting, not one bit. Nuh-uh. Worse, he kept holding up the purple sugar and showing it to Sabrina.


"I WAAAAAAAAAAAAAANT PURPLE SPRINKLES!"

I secretly like it when Max teases Sabrina. She does it to him plenty, and it's heartening to me that he's got the smarts to torture her right back and show her that she can't push him around. Is that wrong of me? I don't care. Max may have special needs but he's made of strong stuff. Some of which is probably purple.

Dave even put some purple sugar in water, and Max had purple water.

It was a very good weekend.

"Oh, mom, leave me alone!"

Some students at a local college are raking leaves in our neighborhood in exchange for a donation to Habitat for Humanity, a favorite cause of mine. I signed up, and two guys and a girl came over and plowed through our front and backyard. Max was right out there with them. He helped rake. He dumped leaves onto the tarp. He helped drag the tarp to the curb.

When I stepped outside to take pictures of him, Max shook his head and waved me in. I tried to hide behind a bush (he looked so cute, I really wanted more photos), but he spotted me and again told me to go inside. I just barely snapped this pic.

Max wants independence. Of course he does. It's something I forget sometimes, because he's still dependent on us for a lot of things—feeding, dressing, diapering. But he's going to be 7, soon. And inside that body is a little boy who wants to be free to do things alone, without his mom or dad. Like any other 7-year-old.

It's me who needs to work on this independence thing. Because every inch of me wants to hover around Max, help Max, take care of Max. I've been in overdrive for years.

I know I have to let my baby grow up, in whatever ways he's ready to.

I have to let go.

Would you like fries with that?

Sabrina has a new favorite sandwich: peanut butter on whole wheat bread with lettuce and a sprinkling of M&M's. I say, whatever!

I have a very open mind about my kids and food: I think they should be exposed to—and enjoy—all kinds. Growing up, my father was into health food (way before it became fashionable), and he was fond of saying charming things like, "Sugar is poison!" Which of course meant that the second he dropped my sister and me off at a Sunday weekend activity program, we'd make a mad dash for the vending machine and buy candy bar after candy bar.

So, no food is off limits for my kids.

Max's favorite eats:
• Avocado
• Chicken and rice
• Chocolate ice-cream
• Sweet and sour soup
• Meatloaf
• Hamburgers
• Chocolate ice-cream
• Sweet potatoes
• Pancakes
• Berry fruit shakes
• Chocolate ice-cream

Sabrina's favorite foods:
• Pickles
• Breakfast cereal (most any kind)
• Chicken nuggets
• French fries
• Grape tomatoes
• Hard boiled eggs
• M&M's
• Pink ice-cream (whatever flavor, as long as it's pink)
• Chicken salad that we tell her is tunafish (we don't want her downing too much tuna)

On weekends, we sometimes hit McDonald's for lunch. Dave and I get salads; I like the Southwest kind with grilled chicken (I've looked up the nutrition info, it's a respectable 320 calories and 9 grams of fat). Typically, I try to grub a McNugget off Sabrina and typically, she says "No!"

When I went to BlogHer's conference in Chicago this summer, I met a really nice woman, Maggie, who works for McDonald's. She recently invited me to a local McDonald's for a tour. I actually got to go behind the counter; haven't you always wanted to do that?! I was impressed by how clean everything was and surprised to see they made salad orders from scratch. I also got to help make a batch of fries (I know, I am getting to be so wild and crazy lately). And I found out you can customize orders—so if, say, you want a Big Mac without the bun and with balsamic vinaigrette, no problem. Or you can get an Egg McMuffin with no butter. Someday, maybe McDonald's will figure out a way to make four-year-olds share their McNuggets with their moms.

What's your general philosophy on your kids and the foods they eat?

iphoto/Aleksandr Stennikov