Raising kids with special needs: Sit back, relax and enjoy the ride

Among the many glorious sites we enjoyed during our visit to Park City, Utah:

Park City, Utah's free transit system; above, Max on a bus.

The St. Regis funicular, a posh tram with leather seating that takes you up to the hotel.

The lift to Canyons ski resort.

Deer Valley Resort's fleet of 30 Cadillac Escalades, used to transport guests. We all loved the automatic "assist steps" that popped out when you stepped in.

Not pictured: Deer Valley Resort's shuttles. Or the Range Rover we rode in when we visited the Montage hotel. Or the airport train we did a loop on before we went through the security line, even though we were already in the right terminal.

Yes, it's true: I spent part of my vacation riding around in various modes of transportation, and often we weren't headed anywhere in particular—Max just wanted to ride. The day we visited Canyons, riding the lift is pretty much all we did, outside of a hot chocolate stop. Another afternoon, Max and I made several loops on a Deer Valley shuttle.

And one afternoon, we repeatedly rode up and down the funicular. A couple who'd gotten off returned 20 minutes later to find Max and me still on it, looking like permanent fixtures.

Years ago, I would have resisted letting Max ride around aimlessly. Way to waste a good (and not cheap!) trip, I would have thought. How boring. I am not going to give in. Or maybe I would have given in and just sat there, feeling bummed that this is what my life had come to: riding around shuttles on vacation with a kid who only wanted to sit in the back seat and peer out the window at the passing scenery.

But that was then. Now we make this part of our vacation, and either Dave or I ride around with Max on the local forms of transportation (and around and around and around). I'll talk about stuff we pass by, check my email on my iPhone, relax. We do this within reason: If we're taking up seats on a crowded shuttle, we get off. Or if Max had, say, wanted to eat dinner in the funicular, I wouldn't have let him, because I'm a tough-ass that way. Although we did have a leetle snack.

Letting go of perceptions of the way things "should" be with Max, on vacation and otherwise, has taken me a long time. I so wanted him to enjoy life the way the rest of us did. But being on things that go is Max's idea of fun, more so than tubing or visiting a museum, and I've come to realize that.

Sometimes, I still impose my own ideas of happiness on Max and my spirits crash and burn when things don't pan out, which is what happened at his birthday party this year. But mostly, I've accepted Max's quirky sense of a good time. It's helped me stress less, let go of sadness and sit back, relax and enjoy the ride.

Are we too sucked into Special Needs World?

Tonight, I got unnerved when I saw a new comment on the post about Max and sleepaway camp. The very wise Gina, who blogs at Inky Ed, is all about inclusion; she mentioned sending Max to a camp for all kids, not just "special" ones. Her little boy, Mac, is in a mainstreamed school in Australia.

CLICK. That was the sound of the proverbial lightbulb going on over my head.

THUD. That was the sound of my heart, dispirited that I hadn't thought of it myself.

I sent Gina a few messages on Twitter. "I wouldn't nag if I didn't think you had it in you to challenge your own thinking and be open to a different path for Max," she responded.

I have been thinking about nothing else since.

Every extracurricular activity in Max's life is geared toward kids with special needs: Softball league, Sunday programs, school, probably camp. He has not one so-called typical friend.

Max is all special needs, all the time. And when it comes to bringing him up, so am I, it seems.

Am I doing Max wrong?

I'm thinking the answer is yes.

Trust me, I don't mean I'm a crappy mother for not having done inclusionary activities. Max has benefitted from the adapted ones we've tried. The personal attention and direction he gets from professionals and volunteers has helped him develop, gain confidence in himself and thrive. I am beyond grateful for them. I appreciate how they welcome Max, quirks and all, which I just wrote about. But it could do Max a world of good to be at activities with typical kids.

Last year, I went to check out a day camp for Sabrina. It was THE quintessential camp—on a lake, with little huts for arts and crafts and cooking, canoeing and other water sports, a big outdoor arena where hordes of kids were dancing around and singing for some sort of event. I choked up as I watched it, hiding my face behind some pamphlets they'd given me at the camp office. I desperately wanted Max to experience camp like that, but I didn't notice any kids with physical disabilities.

"Have you ever had a kid with disabilities here?" I asked the camp director.

He thought for a minute. "Yes!" he said, brightly. "We once had a child with autism! He was on the mild side."

"So you haven't had a kid with physical disabilities?" I asked. "I have a child with cerebral palsy who has some challenges."

"No, we haven't," he said, not unkindly, but he didn't seem particularly interested in continuing the conversation and I didn't force it.

I haven't thought about that again till now. Repressed it. Shove, push, right to the back of my brain, along with all the other pain.

Months ago, I got recommendations for special needs camps from moms I know and Max's therapists. We applied to a sleepaway camp and also a day camp, got accepted. Like me, friends and family thought it could be good for Max. They didn't think about the potential for inclusion; why would they? It seems like a no-brainer that he'd benefit from camp for kids with special needs. I drank that camp Kool Aid too.

No doubt, a special needs camp will be great for Max, especially because it's his first year at one. But including him in a typical camp could open up a whole new world for him. Realistically, it won't happen this summer. I'll have do to my research; I know of no camps that have a mix of kids. Calls will be made. Much convincing might have to be done. Much paperwork would definitely ensue. I'd need to find Max a one-on-one aide. But I don't just think I can pull it off—I know I can, because I will basically make anything happen for this child (excluding the other day when he asked to take a spaghetti bath).

Including Max in our local school isn't the right thing for him now; they aren't fully able to accommodate all of his therapies. But camp? That's a real possibility. Who knows, I might even be able to get him into Boy Scouts.

Tonight, I stepped out of Special Needs World and noticed places with other possibilities. I'm a little scared, a little how-are-we-gonna-do-this but mostly, excited.

Do you wonder about including your kid in typical activities? Have you? I sure could use some encouragement here.


istock/StanOd

Non-Disney stuff to do in Orlando (apologies, Mickey)

Yes, I'm still catching up from our trip to Orlando, where we did everything not Disney. The kids love Disney but Orlando has many other charms besides Mickey and crew.

Nissan lent us a Rogue to get around, a CUV that gets 28 mpg and has good cargo space for the overpackers of this world. Dave loved that the navigation system said "Please" before instructing you what to do. 

We splurged with a night at The Waldorf Astoria Orlando and, well, wow. It was heavenly, from the majestic lobby on in. For people wanting to hit Disney, it's just a few minutes away. Happily, they let us in despite the fact that Max kept pouring himself and the floor drinks from the lemonade machine in the lobby.

We got a suite, with a living room and a bedroom.

Dave said the bed was the most comfortable one he'd ever slept in and wanted to take it home. I think the kids would have happily lived in that suite for the rest of their lives.

The Waldorf shares outdoor amenities with The Hilton Orlando Bonnett Creek next door. It has a lazy river. None of us can ever resist a lazy river, and we were there for hours.

Can you guess where this is? Hint: It's not the Lilly Pulitzer store.

Why, yes, it's Gatorland, a 110-acre theme park and wildlife preserve with hundreds of alligators and crocodiles. We learned to tell them apart; crocodiles have a long snout and are typically a light-tan color, while alligators' snouts are wider and more u-shaped and tend to be blackish-gray. Sabrina and I saw a show where they dangle chicken parts over a swamp to get alligators to jump for them, which was both freaky and fascinating.

The water play area—good, clean fun, and a nice chaser to the alligator show.

Max was enchanted. Wouldn't you love one for your bathtub? *

* Chill, it's not real.

Next up: Universal Studios Orlando. SpongeBob: He's real! The hottest thing right now is the Harry Potter section, though we didn't make it there; I would have loved to see it, but the kids aren't into Harry yet. There's also a Wet & Wild park, but we stuck with the main park, which is all about movies and TV. Because, you know, the kids don't have enough TV in their lives.

We got a tour guide from Universal (hi, Ashland!) as well as access to the park. Sadly, Max wigged out when we arrived; there was a band playing on Hollywood Boulevard, and it unnerved him. Little lesson: It's a good idea to call Guest Services ahead of time and ask about any loud outdoor shows if your kids are sensitive to noise. But Max calmed down once he saw the Madagascar crew. One surefire way to make him crack up is to sing, "Max likes to move it move it!"

If you have a kid with a disability you can get an Attraction Assistance Pass at Guest Services, which means you get to go on the Express line. If there is more than a 30-minute wait on the regular line, they will give you a time to return. All entries to rides are wheelchair-accessible, and in some cases, you can take the wheelchair on the ride, like for the Men in Black Ride and the Shrek 4-D ride.

We hit Fievel's Playland, an outdoor playground filled with oversize props from An American Tail and Fievel Goes West, and the Curious George area.

Max was mesmerized by the huge bucket o' water, we watched it tip over again and again and....

I was totally entertained by the E.T. Adventure ride, and realized that the kids are old enough to see the movie, assuming they can overcome the trauma of the ride because they were a little terrified. I was all, "COME ON, GUYS, IT'S E.T.!!!" But they didn't care, perhaps because they were seeing an alien for the first time.

Inexplicably, Sabrina thought Jaws was a laugh riot.

Max mostly stayed off the rides, but Sabrina hit as many as she could—Jimmy Neutron's Nicktoon Blast, Men in Black, The River Adventure in Jurassic Park.

Her favorite area was Seuss Landing. She loved meeting the characters and riding the High in the Sky Seuss Trolly Train Ride; One Fish, Two Fish, Red Fish, Blue Fish; and of course, The Cat in the Hat.

And of course, the place is sprinkled with stars.

I wish we'd had more than one day at Universal, and I really wish Dave and I had a night there alone, so we could do the scarier rides (Earthquake! Revenge of the Mummy roller coaster! The Incredible Hulk Coaster!), ones the kids wouldn't yet appreciate (The Simpsons Ride!) and enjoy shows and stuff like the tribute to I Love Lucy (one of my all-time favorite programs). We'll be back.

One night we dined at Pie-Fection. The pizza is delicious—you can choose from several crusts, a few sauces and about 40 toppings. It's baked in a wood stone oven. But Purple Spaghetti Max had other ideas.

Next, off to Nickelodeon Suites. The kids were out of their heads with excitement.

There are two water parks with 13 slides and flumes. This is The Lagoon.

And this is what it looks like to get slimed, aka The Mass Sliming, 4:45 every weekday. Also at 10:45 on weekends! Be there or be...clean. I wanted to go, but Max got scared of the crowd so we watched from a balcony. A month later, Max is still talking about the slime and carrying around his little green tube of it.

Brunch with SpongeBob: Does life get any better? Nuh-uh. Max decided to do a dental check.

Nickelodeon Suites is a destination in and of itself. There's a crazy-big arcade, a mall area with restaurants, and lots of activities, from sand art creations to decorating back packs. Kids can meet with the Nick characters—Dora, Diego, Boots, Little Bill, Jimmy Neutron, Blue, you name it. There's a 4-D theatre (complete with wind, water, bubbles and SLIME!), and there are cool Studio Nick shows, too, including Family Improv and SpongeBob's Krabby Patty Celebration.

I was SpongeBob'd out by the time we left. Not the kids.

Last: SeaWorld! Here are dolphins, doing their thing.

Max got a little shy around Shamu. Sadly, we did not get to meet the real one, as he was shopping at the Lilly Pulitzer store.

Random dudes on stilts.

We could have watched the manatees all day long, they are glorious creatures.

Penguins have the best posture, don't they?

Max had a blast at Water Works; we had to carry him out of there, crying, but not before he tried to shoot me down with water. I have to say, his aim is impressive.

Is it wrong to blog about your child with special needs? I say no. Ahem.

Blogging about your kids is one thing. Blogging about a child who is not aware that you have a blog because he has special needs is a whole other thing. Biggest question of all: Are you endangering your child?

On Friday's post about smartphones and online predators, Ken from Blogzilly mentioned that someone reamed him out for blogging about his kids. Called him a "bad parent." Made him feel, he said in his own Ken way, "like a turd."

Ken's opened that can of blog worms, and I'm diving in.

First off: Would it be safest of all for our kids if we never blogged about them?

Yes.

And if we did blog about them, would it be safer to not show their pictures? Or use their names?

Yes.

And if we put our kids in a car and drive around with them on a highway or we cross a busy street with them or we let them ride bikes or play outside with other kids or go swimming, is that safe?

Not completely. Nothing in life is guaranteed "safe" except for maybe sitting on your living room couch and staring at the wall.

Sometimes, doing things for the greater good outweighs the negatives. That's what I believe.

Like many bloggers, I do it because it helps. I know from comments and emails I get that Max's accomplishments inspire parents and give them hope for their own children (his purple obsession, perhaps not so much). I know my words—and ones from commenters—encourage parents. I know sharing information here helps other parents help their kids. I know that through this blog, moms have connected in real life and found friends they needed.

I also blog to raise awareness about our kids. I want parents of so-called typical children to know that in many ways, kids with special needs are just like any other kids—not kids to be pitied, feared or shunned. I want them to understand that our kids are not their disabilities.

It's a two-way thing: Through this blog, I'm inspired and I learn in return. It's because of a reader here, Kate, that I learned Duke University was doing stem cell infusions—and Max had it done. I've gotten therapy ideas, I've gotten ideas that improve Max's quality of life, I've gotten reassurance and reality checks and comfort that have vastly improved my quality of life.

As for Max, who didn't have a say in my blogging about him and who doesn't yet understand what a blog is, I hope that when he does get it, he agrees that this has been A Good Thing. Along with his victories, I have laid out his history and his challenges for all the world to see, and I pray he does not condemn me for doing that. If he does get ticked off, I'll live with the consequences (and be grateful that he reached that level of awareness).

There are no easy answers here. But I have a blog. I think it makes a difference. And I stand by it. You should too, Ken.

OK, let the "yays" and "nays" begin.

Sabrina sings Thomas to Max

I mentioned recently that Sabrina's been doing this impression of Sir Topham Hatt that cracks us up, especially Max. She did it all vacation and here she is, caught on tape. I love how she has no clue whatsoever what the song's actual words are.

She was exceptionally nice to Max last week; clearly, there is something in the Florida water.

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?

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.

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

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

Screw you, brain damage

What a nutty day. Our babysitter stayed home sick, so I scrambled to drive Sabrina to preschool and head into work and Dave took Max to get hooked up for the ambulatory EEG (they're checking for absence seizures). Max screamed bloody murder the entire time they glued the wires to his head. I don't blame him. And that cap! Can you say fashion faux pas? Good thing Max isn't dating yet. And too bad I read Cindi's suggestion yesterday to have him wear underwear over his head only after Max was en route, that would have been ever so much more fab. Next time! Tonight he fell asleep (in my bed, where else?) comfortably enough on his side, the backpack holding the monitor propping him up.

I decided to broach the topic with Sabrina.

Me: Why do you think Max is wearing that special hat?
Sabrina: "Because he's sick."
What's wrong with him?
Sabrina: "He, uh, he, uh, I don't know. Just talk about me now."
What would you like to talk about?
Sabrina: "I'm going to talk about, I'm sick and I have a runny nose. And I'm sneezing a lot."
Do you need to go to the doctor?
Sabrina: "And my nose is stuffy all the time."
Do you need to go to the doctor?
Sabrina: "No. It's almost better."
Do you want to talk more about Max?
Sabrina: "Max likes trucks and he likes to play with them and likes to line up them. I don't like Max when he hits me, only when he plays with me. Now you'll talk about something?"
OK! Let's about Max. Max needed to get a special test to make sure his brain is OK.
Sabrina: "I'm going to spell something on the computer."

safdaccvafap[popopablclws;dkdldllddwdyiiitt w we1te1tqhhekj4e

And that was that. The EEG stays on till Friday morning, then we have our appointment with the neurologist the following Friday.

Tests like this mildly unnerve me because I don't want to hear crappy news about Max's brain. When Max was a baby, our neurologist told us to look at what he was doing and not get disheartened by the brain damage in the MRI photos taken the week he was born. MRI film may look grim but it doesn't tell what a child's capabilities are—and how he can overcome the damage. Dave and I have stuck with that advice since. Dave actually found an amazing story yesterday on CNN about a woman named Michelle Mack in Falls Church, Virginia, who was born with half a brain. She has some challenges but basically talks normally, graduated high school and lives a full life. Get this: The right side of her brain rewired itself to take over functions controlled by the left, damaged side. Wow. Just, wow.

And so, the scary MRI film sits way in the back of a closet, a monster in the closet that we never let out. Of course, if Max is having any sort of seizures, we do need to know. They'll be controllable by switching medication, if worst comes to worst; the one he's on now doesn't help with absence seizures.

Now, more rock-the-vote requests: Mutual of Omaha did a tour this summer and recorded people's "aha" moments. They got 1000 stories, narrowed them down to 75 and they're picking a Top 10 based on votes. Included in those videos is Barry, who talks movingly about having a son with Down Syndrome. Voting's open till tonight to 12 a.m. Pacific Time, so jump in!

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

Yet another "aha!" moment about raising a kid with disabilities

Riding the train home from work tonight, I bumped into a woman I know from my city. Her twins were born the same year Max was. I asked how they were doing.

"They're in first grade—it's so hard to believe!" she said.

It hit me then: This would have been Max's first year in elementary school, too. Incredibly enough, that hadn't even occurred to me when September rolled around. I was just excited for Max to go back to the school for kids with special needs that he's in, one that doesn't have grades, per se.

I didn't think "If Max hadn't had that stroke, he would have been in first grade now."

I did not compare him to typically-developing kids.

I did not mourn.

I just took Max's life as it is. And that's a momentous thing.

My mind long ago accepted that I have a child with special needs; I got Max into our state's Early Intervention program when he was a month old, and I've been paving the way for him ever since. It's taken my heart a much longer time to accept those special needs and to cherish Max for the child he is, not the child he could have been. But it's happening. It's really, really happening.

A letter to Max: I do not regret your disabilities

Dear Max,

It's the night before your stem cell infusion at Duke University.

We've both come light years away from the week after your birth when you were in the NICU and I sat at the kitchen table in our house, our too-empty house, and desperately Googled "treatments for brain damage." I was terrified of what lay in store for you. That's when I first learned about stem cell therapy. I couldn't find a single doctor in the country who was doing it. There was one I got on the phone who said he would be willing if we got special dispensation from The Food & Drug Administration for a life-or-death situation. Then it became clear that you were going to make it; it was less clear you were going to thrive.

We lost track of the stem cell therapy, caught up in a whirlwind of doctor visits, other alternative treatments, Early Intervention and finding private therapists to work with you. You made progress on your own timeline, proving the NICU doctors wrong along with the so-called specialist who said your future looked "ominous." And then, this spring, I learned about the Duke University stem cell program from Kate, an incredible woman who somehow found this blog and who keeps a journal about her son. Kate, there are no words strong enough to express how grateful I am. I am also eternally thankful to my friend Wendy, who's watching Sabrina while we're away and who told me to bank your cord blood at birth. "You never know," she said. So true, so true.

Max, if you are someday reading this blog, I need you to understand something very important. Your dad and I are not doing this because you are lacking in our eyes. It's not because we want you to be like other kids. We are doing this only because it might make life easier for you in some way. We try our hardest to give you the best life possible, but if there is a chance you might be able to use both hands a little easier, to eat a little easier, to speak a little easier, to think a little easier, then we need to go for it.

Back when I first started talking with other moms of kids with special needs, I remember one in particular telling me that she would never trade her child for a "typical" kid. I thought she was in deep, deep denial. But now I understand. I look at you and I see only an amazing kid, not a disabled one.

You are a boy who is full of enthusiasm and sweetness and brightness and good humor and all sorts of wonderfulness. You are fascinated by cars, planes, trains, garbage trucks, tow trucks, dump trucks and basically anything that has wheels (last month, you were able to steer a toy tractor by yourself for the very first time); you can play baseball and enjoy watching it, too; you can count to ten, speak a bunch of words and recognize some in writing; you can down seemingly endless amounts of chocolate ice-cream and birthday cake; you get a wicked kick out of pulling your sister's hair; you adore rain, but not the thunder; you're obsessed with the movie Madagascar, Curious George books and, tragically, the TV show Spongebob Squarepants; you like room service and demand it when we travel; you give the most delicious slurpy kisses; you adore computer games; you enjoy all sorts of music and sometimes break into this crazy dance move that kills me every time; you have a happy squeal that makes strangers smile and a giggle that makes the world laugh with you. I am not exaggerating when I say that you charm everyone who meets you. Even grumpy people.

On this day, in the seventh summer of your life, I want you to know that I love you infinitely. I could not possibly love you any more if the stem cell therapy were to work miracles. And if it doesn't do a thing I will, of course, love you just the same.

I love you as you are, Max.

What's next on my wish list for Max

So, the thing about having a kid with special needs is, you're never satisfied. Of course, when they first do something you've been waiting and praying and waiting for them to do, you're ecstatic. You do a happy dance (me, I'm a screecher), praise them like crazy, call your friends and family, blog about it, alert the press.

But soon afterward, you're wanting that next success to happen. You're impatient for it. That last achievement is left in the dust as your hopes are roaring off to the Next Big Thing.

I so want Max to be potty-trained. I am also dying for him to learn how to drink through a straw (here he is, pretending with my favorite way to waste money). Using a straw will be a huge step toward better tongue and breath control (critical for speech), but it'll also be a giant step toward independence. I'm not quite ready for him to start drinking coffee yet, though. One hypercaffeinated person in this house is enough.

What's next on your wish list for your child?

Please don't give my child special treatment (though I know you mean well)

Thanks again for the nice comments on the last post. Lurkers and Dave, that wasn't so hard, was it? Hee, hee.

We have a whirlwind of a week coming up: We're going to Hersheypark Thursday, then Sunday we're headed to Duke University for the stem cell therapy. May I just say, OMG! I didn't think I'd have challenges over at Hershey, chocolate bars don't tempt me, but today someone told me they make Reese's Peanut Butter Cups. This could be trouble. I think I am going to tell all of you exactly what I weigh, so that will be a deterrent for me to OD on them.

Um, maybe not. Wait, I know, Max! Let's talk about Max! He had a blast at the pool this weekend, a lady was there doing face-painting. Max went right to the front of the line. She asked the other kids if they minded, and they didn't.

I did.

I am OK with Max getting special treatment when it's truly necessary—like at Disney, the crowded lines wigged him out, so the special passes made sense. But when there are three kids waiting to get their faces painted and Max cuts the line, that's not OK. People think he's cute and they feel bad for him, so they grant him these favors. But Max needs to learn manners and patience; I don't want him to grow up to be the world's most obnoxious person with cerebral palsy. He also needs to learn that he IS like other kids. Nor do I want them to see him as an "other," or resent him.

So, I told Max he had to wait his turn. And he did. Then he pointed to the cupcake picture and the purple paint tube and the lady painted a purple cupcake on one of his hands.


Then he pointed to the picture of the fish, and she painted a fish on his other hand.


Then he pointed to the picture of the cupcake again and touched his face, so Max got a cupcake on his face.


Boy, was he happy.

Then I said, "Say thank you!" and he said something that sounded pretty close to it.

And boy, was I happy.