What cerebral palsy is and isn't: World Cerebral Palsy Day 2012

Today is World Cerebral Palsy Day. The organizers asked people to submit a brief video or message with an idea for bettering the world for people with CP. One of my most desperate wishes for Max is for people to quit pitying him or being wary of him and just see him as a kid, period. Given that there's no Men In Black type wand I can wave over people's heads, I just have my words. So my contribution today is to share some of what I've learned about cerebral palsy over the years. I hope it helps people better understand what CP is and not feel bad for Max and other kids with cerebral palsy who kick butt.

5 THINGS CEREBRAL PALSY ISN'T

Cerebral palsy isn't a disease. It's a disorder. And it sure isn't catchy, although from the way people sometimes stare at my son, you'd think it is. People sometimes fear what's different, it's true—but Max is a kid, not an alien. He is a rather awesome kid. I'm often asked what, exactly, adults or kids should say to a kid with special needs. Here's what you can say: "Hi."

Cerebral palsy isn't a muscle or nerve problem. It's caused by damage to parts of the brain that control muscle movement and coordination—"cerebral" means having to do with the brain, "palsy" means weakness (there's a good history of CP here). Max's brain damage occurred at his birth, when he had a stroke. Until I had Max, I wasn't aware that your brain controls every muscle in your body (apologies, high school anatomy teacher). But it does, even the ones in your tongue, which is why Max has issues with talking, eating and drinking, along with challenges using his hands, arms and legs. Thing is, Max hasn't gotten the memo that he has physical "issues"—this is the body he was born with, and he uses it the best he can, same as any of us.

Cerebral palsy isn't necessarily a cognitive issue. Some children with CP have intellectual disability; some do not. CP affects everyone in different ways, depending on which part of the brain is damaged. Max has some cognitive impairment. So what if he isn't at the intellectual "level" of other 9-year-olds; he is plenty bright, plenty aware, plenty wily (he is a master at tormenting his little sister). Max learns in his own way, on his own timeline. This year, he started to read, and I couldn't have been more proud. Max does things when he is ready; there is no race to a finish line.

Cerebral palsy isn't progressive. Although the brain damage doesn't get worse, issues with muscles can improve or worsen over time or remain the same. Last year tendons in Max's right foot tightened up and made it turn inward, and he needed a series of casts to help straighten it. It gave us a scare but the casts did the job, and life went on. We're lucky to be living in a time when non-surgical options like this exist, although if Max does someday need surgery to ease tightness (aka spasticity), we'll have that option, too.

Cerebral palsy isn't curable. Not yet, though there's been recent promising research about interventions at birth that could prevent it. But CP is manageable; physical therapy, occupational therapy, speech therapy, and even music therapy have helped Max better function, and continue to maximize his potential. The CP has had no affect on his determination, which is not the least bit impaired. If more people had determination like Max's, a whole lot more would get done in this world.

...AND 4 THINGS CEREBRAL PALSY IS

Cerebral palsy is an umbrella term for a group of disorders. There are three basic kinds: With spastic cerebral palsy (the most common), muscles are often stiff. Max has mild four-quad spastic cerebral palsy, which means all four of his limbs are affected in some way. Those with athetoid cerebral palsy often have slow and writhing or fast and jerky hand, feet, arm and leg movements, and may grimace often. People with ataxic cerebral palsy often have poor coordination and may walk unsteadily and have trouble controlling their arms or hands when reaching for something. Some people have a mixed form of CP.

Cerebral palsy is the most common childhood motor disorder. About 764,000 kids and adults in the U.S. have CP, according to United Cerebral Palsy, and 8000 babies and infants are diagnosed with it each year. About 17,000,000 people worldwide have CP, according to Reaching for the Stars. In case you're wondering, it is less common than autism—an estimated 1 in 268 kids in the U.S. has cerebral palsy, while 1 in 88 kids has an autism.

Cerebral palsy is a disorder that can be detected early on. While signs of CP vary, there are main ones in babies and young children. With those under 6 months old, a lack of head control, stiffness or floppiness, overextending the back and crossed legs are the major signs, per the Centers for Disease Control and Prevention (CDC). Max had stiffness as a baby and still does; it can make movements challenging at times, but it does not hurt him. Signs in babies older than six months including not rolling over, bringing hands together or to the mouth, and reaching with just one hand while keeping the other fisted. In babies older than 10 months old, signs include crawling in a lopsided way and not being able to crawl on all fours. The earlier the diagnosis, the sooner a child can get Early Intervention services.

Cerebral palsy is what my son has, but it does not have him. Max may have cerebral palsy, but he is not defined by it. He doesn't sit around feeling sorry for himself. He just knows to enjoy the life God gave him and that we, as his parents, have built for him. Max's love for his family, learning, riding his bike, watching movies, and downing copious amounts of chocolate ice-cream is as strong as any child's. My love for him is as strong a love as any mother feels for any child.

How to ask about my child with special needs

The comments on yesterday's post were absolutely, positive awesome. I hope a whole lot of other parents out there (i.e., ones who don't have kids with special needs) read them and learn from them. Heck, I learned from them. Much wisdom there.

An interesting topic came up toward the end of the day: people who ask about your child. What's the "right" way to do it? Is it appropriate? What makes you want to go "ARRRRGH?!"

First off, let's assume the question is coming from someone who does not have a child with special needs. Because there are no boundaries (for me, anyway), with other parents in the special needs universe or with adults who themselves have disabilities. It's like within ten seconds I am telling them about the brain damage and the Botox for the drool and the nasty scar I have from the c-section. OK, not that.

Let's assume we're talking about how you deal when parents of so-called typical kids or strangers ask about your child. This doesn't happen often, but I have had people say "What's wrong with him?" I've had the same reaction Jo and many of you have: WHY ARE YOU SAYING THAT? It's a suck-y question, as it focuses on the disability and assumes something is "wrong." Also, it's rude and instinctively makes you want to respond: "Nothing. What's wrong with you?!"

As Debbie put it on Jill's post, "You can ask what her diagnosis is...but when you ask me what's WRONG with my child, I will probably tell you nothing. And get defensive and sad because while she has special needs, there is nothing wrong with her." And as Natalie said, "Anyone over the age of six or so should know not to use that terminology."

In general, I think it's better to speak up than to just stare—but it all depends on how you ask the question.

I have also had people play Guess The Disability. A common one: "Oh, does he have autism?" I'll usually answer, "He has cerebal palsy." If the person keeps asking questions, I'll keep answering them. Like I said, I've learned to use these opportunities to educate and raise awareness. I want people to know that babies can have strokes, that my son is not a tragedy, and that kids with special needs are in many ways just like other kids and should be treated as such. All bets are off, though, if I'm in a pissy mood. I am not Mother Teresa. Like any mom out there, sometimes I just don't feel like talking.

The best conversations I've had with other parents who don't know us well, and even with strangers, have been the ones that have started off with some nice observation about Max—like, "He has the best smile!" Or ones that have not started off about Max, and then circled around to him. It's common sense: Once you have rapport with someone, it's easier to get personal.

So, how do you guys want to be asked about your child with special needs?

The progress I never think about (that happened on its own)

Like many parents of kids with cerebral palsy, I'm very focused on Max's physical and cognitive progress.

The Botox shot in his right hand has done a nice job of loosening it up, and he's been spontaneously using it to lift more things. Score! The Botox to his salivary gland hasn't had a real effect on the drooling, though, so we'll have to consider other options. Tomorrow, the serial casting starts. There's no purple kind available, I've been told, but I've got a bunch of Purple Sharpies. I just sent out Dave to buy Max a new purple truck to distract him. "If there's no purple truck, just find anything fun that's cool and purple," I said, and so Dave is currently on a purple hunt in Target.

Max is also progressing with reading, and getting into spelling. The other day, he pointed to the letter "g" in a sign and then to my green shirt. He was telling me he knew "green" began with a "g." I'm loving it. I'm high on it.

So I've been all sorts of focused on Max's muscles and limbs and brain power. I haven't given much thought, if any, to his emotional maturity. I just couldn't let myself get concerned about it—too many other worries on my list. It was something I figured would happen over time, and it has.

In the past year, Max has grown less fearful of visiting new places and trying new activities. He gets upset when I tell him he's misbehaved. He gives his little sis this "What's your problem?" look when she's having a tantrum. He gets concerned by crying. When my mom called in the middle of the night a few months ago to tell me that my dad had died and I sobbed, Max was there, and he couldn't stop kissing me.

Over the weekend, we were at Max's favorite place in the whole wide world, a beach condo we go to during the summer. Max has, historically, wailed whenever we've left. Perhaps you've heard him? He'll traditionally start the second he sees me packing up our bags, and not let up till we're a half hour down the highway. It makes going home so pleasant.

Only here's what happened this time around. It started when I put a packed bag filled with the kids' clothes in the kitchen, and stepped away for a minute. When I came back, it was gone. I looked in the bedroom. Max had dragged the bag in there and was quickly tossing clothes into an open drawer.

"Max!" I said. He looked up with a devilish grin on his face, and then we both laughed hysterically.

When we drove away, Max got a little weepy. "I know, Max, you don't want to go home," I said. "Me either. We'll come back soon, OK?"

And just like that, he quit sniveling and nodded his head.

Max has fallen a little behind with his walking because of his tight right foot. He's moving ahead with the emotional maturity.

A few steps forward, a few steps back: That's how it goes, right?

Cerebral palsy is a sneaky demon

Sometimes, I forget all about the cerebral palsy. It's not hard to, because Max is such a happy, healthy kid. Sometimes, it blindsides me, as it has recently—and shatters my calm about being mom to a kid with disabilities.

It started a couple of months ago, when I asked one of Max's speech therapists why he has so much trouble saying "hard" consonants, b's and p's and k's and d's. She explained how a lot of it has to do with breathing control, and how in turn that has to do with trunk control and weak core strength.

I was more aware of these issues when they prevented Max from crawling and walking, but once he was on his feet and getting around, it was no longer up there on my list of worries, replaced by other priority worries. Now it was back to haunt him, and me. I organized a conference call with his physical therapist (at school), occupational therapists (the one at school and the one he sees privately twice a week) and speech therapist (at school). Over the years, I've found that calls like these are the fastest, best way to come up with ideas.

I learned some new stuff during the call—for instance, Max's physical therapist had him doing sit-ups. She recommended I do them with him at home. So I've been sitting on his feet while he's lying on the floor and gently pulling him up by his arms. To motivate him, I do sit-ups, too, which cracks him up. I am not sure belly laughs are helpful for his core control, but at least they entertain him.

Max's PT reminded me that Max has been doing yoga at school, and sent home some positions to try.

The poses are easy enough, like the snake.

I don't think either of us will be doing this one anytime soon although if I had to take bets, my money is on Max.

So, I knew we had to focus more on core strength. Then a couple of weeks ago, the physical therapist told me that Max's right foot is tight. It's one of the reasons his new braces aren't fitting him so well, she thought. I hadn't noticed that but when he came home I looked and, sure enough, his right foot was turning in. Uh-oh. And...sigh. He still manages to walk OK, though he limps ever so slightly, with his foot slightly arched.

When I stretch his right foot, as we're supposed to do, it feels really stiff and impossible to flex. It is the cerebral palsy, and my child is caught in its grips.

"Does it hurt?" I've asked Max. "Noooo," he says, shaking his head, and it brings me some peace to know that he's not in any pain, and that he is able to tell me so.

We took him to the physiatrist last week. Turns out that Max's recent growth spurt has affected the muscles of his right foot (it's his more challenged side, since the bilateral stroke he had was worse on the left side of his brain). Because he suddenly shot up, the tendons couldn't keep pace. They were already on the tight side, but now they are even more so (spasticity, they call it). So Max will get a series of casts for three weeks, one a week. Each will subsequently stretch his foot a bit more, to relax the muscles and set them straight. Sadly, the casts do not come in purple (I asked, of course).

Meanwhile, tomorrow Max is getting Botox in his right hand, to help loosen it up. We're also trying Botox in his jaw to see if it helps the drool ease up. I still have no set plans to open that Mommy and Me Botox Clinic that could earn us a fortune.

This sucks. Just. Plain. Sucks. I always knew that during adolescence, with its hormones gone wild, Max would be at renewed risk for seizures. I never thought that at age 8, the cerebral palsy would flare up.

Of course Max will still be able to walk, no matter what. It's not going away. But the walking has been a hard-won victory, years of toil (Max) and tears (mine), and the prospect of regression is unnerving.

Tonight I am angry, so angry, at the cerebral palsy.

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.

My child is not his age, and that is OK

"Can you help? I need a purple book, my son's obsessed with purple." That's me talking to the nice lady at Barnes & Noble over the weekend. I'd gone there to return some SpongeBob SquarePants books Dave had bought Sabrina, because I think SpongeBob is taking over her brain. Instead, I got her a book in the Charlie and Lola series, I Will Not Ever Eat A Tomato (these books are adorable!), and then I wanted a good, purple book for Max, as I am his purple enabler.

"How about Harold and The Purple Crayon?" she says.

"Got it!"

"Well, I know this is for girls, but what about Purplelicious?"

"Got it!"

"Lily and The Plastic Purple Purse?"

"Got it!"

I didn't even bother to mention that we had a copy of I Love You The Purplest, signed by the author herself.

I spot a book with a purple cover in a display case, Jungle In My Bedroom. You push a button to make a light pop up on every page. It's adorable, and it's got lots of PURPLE, but it says "For ages 3 and up." Suddenly, I'm a little stuck. Max is 7. Chronologically, he's too old for this book. Developmentally, he is not.

ARGH. I sometimes feel stumped when I'm confronted with age-appropriate numbers such as this. Actually, they used to freak me out. I spent most of Max's early years obsessed with whether or not he was doing things that were "right" for his age, and it brought me nothing but anxiety and heartache. I long ago tossed the child-rearing books and quit subscribing to the "Your Child Now" updates, yet the "For ages ___ and up" lines on books and games still give me pause. I wish there were a more inclusive way to describe a book's relevancy to a child, but these are the standards. And I can choose to pay attention, or I can ignore them.

It doesn't take me long to decide: Reading anything to Max that will engage him is age-appropriate.

I get the book. Max liked it. He laughed. He listened to every word.

All right, that's it: To hell with the numbers.

Have you ever blamed yourself for what happened to your child?

I recently finished a book that's taken me months to read, This Lovely Life. A writer friend of mine knows the author, Vicki Forman, and recommended it to me. It's taken me a while to read because I sobbed every single time I read it. Literally sobbed over a book like I've never sobbed before. The author had twins, Evan and Ellie, born at twenty three weeks gestation who each weighed a pound; this is her memoir.

I have to admit, I don't typically want to read books about ailing or disabled children. I've got a few of these books on my shelf that I keep meaning to get to, but then I never feel like it. There are plenty of real-life moments where I get distressed about Max; I don't need that pain in my reading material. But I was sucked into Vicki's book, and then I had to keep going. It is so honestly and powerfully and beautifully told, its emotions all too familiar—the anger, the grief, the disbelief, the resolve, the heartbreak. It is a book worth the pain it may unearth.

One passage in particular choked me up, the part where Vicki is waiting to hear from doctors about her newborn twins and she's thinking about what she could have done differently:

I shut my eyes to the memories and began a ritual then, in my vigilance, that would accompany me during the next days and weeks and even years, one where I rewound the clock to the moments prior to my walking through the hospital's sliding glass doors that afternoon, as if by staying awake and rewinding the clock I could also change it all, have the story turn out differently. The moment I felt those dull pains, earlier that morning. I call the hospital before noon, I don't wait until I am bleeding. Or earlier. Saturday night. We'd been out to dinner and I'd been almost unable to climb the steps to the restaurant. Why didn't I turn to my husband then and say, I think I need to go to the hospital? Why didn't I recognize my pain as signs of labor?

This passage took me to a painful place, one I hardly ever go to. The place where I wonder if anything I did caused Max's stroke. Factually, what caused it was a loss of oxygen during birth. But that hasn't stopped me from thinking the worst. One thing in particular stands out.

In my seventh or eighth month, I spray-painted the medicine chest in our bathroom. The label said you shouldn't do it if you were pregnant. But I was in extreme nesting mode, determined to have the house "done" before Max came along (we moved in here in August, he was born in December). I was super-prego, full of energy and enthusiasm and excitement. I was in glowing good health. And so I repressed my better judgment, put on a face mask, opened the window and I spray-painted that chest. It took maybe five minutes. As soon as I was done, I regretted it. If anything happens to the baby, I thought, I'll know it was this. Yes, I thought that. But I didn't really think anything would happen. Certainly not anything as insane as a baby having a stroke, a bilateral stroke that's the cause of Max's cerebral palsy.

A doctor I once met with told me the only other moms he'd met whose babies had strokes were moms who'd smoked crack during pregnancy. And I thought, Well, that pretty much absolves me of any responsibility. I also thought, Go to hell for telling me that.

I know the five minutes of spray-painting did not cause Max's stroke. I told our neurologist about it years ago, and he basically said it was crazy talk. It is not something I regularly ponder or feel guilty about. But it is the one black speck of doubt in my mind and it will always be there, no matter what the facts are.

I hope, I really hope, none of you blame yourselves for your children's issues.

Photo by leonrw

Happiness fantasies for my child vs. happiness realities

I've been thinking a lot about our Disney trip, both because we had such a fantastic time but also because it's clear I keep sabotaging my emotions by building up too-high expectations about Max and how he'll enjoy himself. I wanted him to have that complete Disney experience since that's what I thought would make him happy. And I want to make this child deliriously happy, because deep down I feel he deserves it for all the challenges he's been handed in life. I also think it's his right to delight in Disney the way other, typical kids do.

These are the feelings I packed with me for our trip to Disney World.

I've written before about learning to appreciate the small stuff in life, inspired in no small part by Gretchen Rubin's blog and book of the same name, The Happiness Project. Generally, I do appreciate the small stuff. But when it comes to big events and big trips—let alone Disney World, the mother of all kiddie trips—my hopes and expectations soar, despite myself.

On Sunday, I was looking through vacation photos yet again. And I discovered something I hadn't seen before: all the little things that made Max (and Sabrina!) happy.


Like staring out at the sea


Coloring in the cabin


Getting a wagon ride from Dave


Dumping sand out of a bucket


Eating an ice-cream cone


Riding the monorail


Stroller silliness


A new purple bowl. A staffer at the hotel had been putting out bowls for an activity; Max grabbed this one and wouldn't let go, so she gave it to him. Max carried that purple bowl all over the place; he even got Goofy to pretend-eat out of one.


Enjoying the airport train

I realize, in the end, these seemingly minor moments of joy were just as blissful for Max as the major thrills I'd hoped he'd experience from the rides. It was a magical experience for him. Max's own kind of magic. A low-key, purple kind of magic.

Excuse me while I go adjust my reality meter once again.

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.

"Mommy! If you don't let me watch TV I'll call the police!"

There are days when you think caring for your kid with special needs takes so much out of you. And then there are days like today, when you're cooped up with the kids because it's a slushy, icy mess outside and suddenly it occurs to you that your child with special needs is actually the easier one of your two. A few choice quotes from a certain five-year-old:

"Your teeth are yellow."

"You are a cranky lady!"

"Waaaaaaaah! I hurt my nose on the window!"

"I'm. Wearing. My. Pajamas. All. Day."

"See if I care!"

"Come on, big boy, let's box!"

"I'm only drinking juice! No more milk!"

"Waaaaaaaah! Max stepped on my toe!"

"I am NOT going to listen to you!"

"Time outs are for babies!"

"My belly hurts! I want pizza with PEPPERONI! It'll make it feel better!"

"Waaaaaaaah! I want to watch TV!"

"Maaaaaa-aaaaaax, you like BLACK! Only BLACK! Max doesn't like purple!"

"I said I want PEPPERONI!"

"You're NOT going to leave me home and go on the Disney Cruise! I know!"

"Waaaaaaaah! Max pulled my hair!"

"I don't like you!"

"Hey, you got a penis!"

"Mommy! If you don't let me watch TV, I'll call the police!"

I stared at an adult with disabilities, and wondered if I was seeing Max's future

I am sitting in the Whole Foods food court. I sometimes come here to work during the afternoon, when it's impossible to get stuff done at home. Sabrina is constantly by my side, wanting to go on the computer and mess around. Small wonder—she sees me on it all the time. "The Apple [computer] doesn't fall far from the tree," Dave likes to say.

So, here I am in Whole Foods. A woman's cleaning the tables. She has Down syndrome.

I watch her from behind my computer screen. She's pretty, with short, swingy brown hair, and precise in her movements: tear off two paper towels, fold neatly in half, spritz the table with cleaner, wipe in small circles.

As she sprays and wipes the tables, she is murmuring to herself and smiling. I wonder what she is saying.

I return my eyes to my computer screen, only I do not really see it. Because my mind is racing and I am thinking only about whether this is the sort of job Max might have someday.

This was not my plan for my child. Not that I had a specific plan, but it vaguely included brilliance, a top-notch college and a high-powered job. It did not include cleaning tables, mopping floors, pushing the mail cart around an office or other jobs I have seen people with disabilities doing.

Quit thinking like that, I command myself. How absolutely awful and demeaning to impose your idea of "success" on her. This is her job. It is a respectable job at a nice place. She takes pride in what she's doing.

Oh my God, if you write about this you might tick off the people with disabilities who read your blog. They will think you are slamming them.

But I am not slamming them. This is about a parent's latent grief. This is about letting go.

Seven years after Max's birth, I still mourn the loss of the child I expected, even though I love and adore the child that he is. And I think that is something you can only understand if you are a parent of a child with disabilities, not an adult with disabilities. Seeing an adult who's handicapped is a shock to the system, the same way I feel when the toy catalogs for disabled kids arrive in the mail, or when I am at the play area in the mall surrounded by kids clambering all over things and there's Max, struggling to climb a step. Except that seeing an adult who's disabled is even more unnerving; it is my fear of the future staring me in the face.

I have accepted Max the Child with disabilities; I have not yet come to terms with Max the Adult with disabilities. I will grow into it, I know, in the same way I grew to understand and accept Max's challenges. But right now, it is too difficult for me to grasp. And too painful.

I know that other moms have similar feelings. A reader recently e-mailed me about a friend of hers with a disabled kid who got livid when her son's counselor suggested that he could be a bagger at a supermarket.

I look up again and see her smiling sweetly to herself.

And suddenly, in the middle of Whole Foods food court on a sunny winter afternoon, I am getting choked up.

Crap.

Stop it. Just stop it, I tell myself. You do not know how Max will turn out or what his abilities will be. Who knows what will happen. Whatever he is like, whatever his abilities, he will be OK.

And then, I am calm again.

And she is still cleaning: tear, fold, wipe.

And she is smiling again.

And she seems perfectly content.

"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.

Max and I are going to be rich and famous!

Oh, OK, so maybe we might just win a contest. I'm a finalist for The Bump Mommy Blog Awards in the "Hottest Mom" category.

Oh, OK, it's the "Special Needs Blog" category. And the competition is fierce; all of the blogs are worthy of recognition. As the saying goes, it's an honor to be nominated. I actually welled up. This is also a welcome distraction from what's sure to be a minor medical drama tomorrow, when Max goes for his ambulatory EEG to check whether he's having absence seizures.

Shameless plug alert, click to vote for me! Just scroll down to the bottom of the page. Voting ends October 19, and I'm pretty sure you can do it as often as you'd like.

Mom, you're going to vote for me, right?


Illustration by Rozana

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

The missing California boy with cerebral palsy

Some of you may have heard about Hassani Campbell, the missing five-year-old boy with cerebral palsy from Oakland, California. The story has been haunting me. His beautiful face has been haunting me. Jo has a really smart post today about media bias toward cerebral palsy. She notes that the press has told the public to look for a little boy with metal braces on his legs, but points out that SMO braces (the kind Hassani has) are not visible with shoes, and that kids with these braces often walk just like any other kid. So people would think they should be looking for a child with a noticeable limp and noticeable braces, when, in fact, Hassani looks like any other kid.

This bias is so prevalent. When I tell people that Max has cerebral palsy, many automatically assume he is in a wheelchair. I have to help them understand that cerebral palsy comes in many forms. Max's legs are the least affected part of his body; his arms, oral-motor skills and cognition are the most affected. Conversely, there is a boy in Max's school who is completely wheelchair bound but who is brilliant.

Tonight, I am thinking of Hassani, and praying for his safe return.


Photo from Oakland Police Department