What it's like to find out you have another child with special needs

My friend, Hallie, is a writer I met in the magazine world. She has a little girl with Down syndrome, and she is one of the only people I know in our circle who has a kid with special powers—a special bond we share. She also has a son, Teddy.

Four months ago, Hallie had a third child, Geoffrey. Last week, she found out he has albinism. She wrote a very moving post, Welcome To Iceland, and I'm sharing part of it here. If you know of a mom of a child with albinism, or of a mom who has child with congenital vision loss (one of the effects of albinism), please connect them.

Welcome to Iceland

Geoffrey has albinism.

We learned this on Thursday.

Jamie and I have both known in our gut for a while that something was “off”. We noticed—and worried—about the fact that Geoffrey wasn’t making eye contact. We noticed that his eyes kept darting back and forth, from left to right, in a way that made him look shifty eyed. We noticed he’d smile and laugh if we said his name or tickled him, but if we looked straight into his eyes and smiled, we’d get no response. We noticed that he wouldn’t reach out for objects unless they were right in front of him, or that if given an object he wouldn’t look directly at it but instead would explore it with his hands and mouth.

We talked about it with each other but we thought we were being paranoid. As the parent of one child who already has a disability, we are so sensitive to even the slightest hint of something wrong. Geoffrey was meeting his other milestones on time or even early. We decided to carefully watch, and wait.

At Geoffrey’s four month checkup on Wednesday, his pediatrician diagnosed him with nystagmus, a condition where the eyes move back and forth. We saw a pediatric ophthalmologist on Thursday, who examined our son and explained to us that he has albinism, a condition where there is a lack of pigmentation (color) in the eyes and often in the skin and hair as well. It’s this lack of pigmentation that leads to vision loss.

Needless to say, we are stunned. We never in a million years imagined this could happen.

Click to continue reading

Helping kids with special needs fit in: How much do you reveal?

Max is going to try out Cub Scouts. This week I spoke with the Boy Scouts leader in our area, Chris, and we'll be attending the next Cub Scouts meeting. Max will be in the Bear Den, a group with maybe 8 kids who are all his age. I like that it's small.

"We also have monthly meetings where all the dens come," Chris said.

Rut-ro.

"Max is not really into loud noises and crowds," I said. "So we might not be at those."

Chris and I spoke about Max's CP. At first, I'd wondered whether I should mention it, or just let Max show up at a meeting. But, I told him. I've learned that it's better to say something and feel things out ahead of time, make sure there is an open-minded attitude. I figured the Boy Scouts, of all groups, would be inviting. Chris was.

I asked him if they'd ever had other kids with disabilities in Cub Scout troops in our area. He mentioned there had been some boys with ADD. Max's challenges are totally different, but we'll see how it goes. It's the first inclusionary organized activity Max will be participating in, something that's been on my mind since camp this summer.

Dave and I sat out on our deck and had dinner later that night, after my conversation with Chris. I want Dave to be the one to go with Max to the meetings. We don't really have any Daddy-son activities in our life right now. I think it'll be good for both of them.

Dave told me that when he was a kid, his Cub scout den had a boy with CP in it. Usually Mr. Positive, Dave looked kind of morose. "This kid didn't really do much, he just sort of hung out as we did stuff like crafts and learning how to use a knife," he said.

I put my fork down and looked at him. "Honey, you'll be there with Max, you will be able to help him," I said.

"I hope so," Dave said.

So, we'll see.

Meanwhile, this is what I'm wondering: Should the den leader let the other cub scouts know ahead of time that Max has special needs? Or should Dave and Max just show up?

I'm leaning toward just showing up.

Photo/Jenn Owen

A sister speaks out against the word retard, another sister learns

Yesterday, I watched a video called "Retarded" by a teen girl named Regan. A reader, Stephenie, sent me the link.

I cried as I watched it. Those words hurt. I thought back to how painful it was when some jerk on Twitter tweeted at me "How is the photo wrecker?" after I asked him not to use the word "retard" and how I had to go to Urban Dictionary and look up what it meant.

I cried because I get a little dejected when I write about how vile the word "retard" is and people write back stuff like "You are so retarded" or defend its usage. Not that I am going to stop speaking out about it.

I cried because I was moved by her strength and love.

I cried because I yearn for Sabrina and Max to someday have the relationship this sister and brother have.

Then I showed the video to Sabrina.

We've never yet discussed the word "retarded." She is still trying to grasp what special needs means. The two of us were out having lunch the other day and she saw a teen boy in a wheelchair at another table eating with his family. He looked like he had cerebral palsy.

"He's special needs," she said.

"Yes, he has special needs," I said.

"He holds his hands like Max does sometimes," she said.

His hands were tucked downward.

"Yes, sometimes Max does that," I said.

"And sometimes when Max eats he holds his hands like this!" she said, and she pulled her arms up tight against her body.

"Yes, Max has cerebral palsy and having that means that sometimes your muscles get tight," I said.

And then she didn't ask anything else and I didn't offer up any more. I let her steer these conversations.

But I really wanted her to see the video. I knew she wouldn't understand all the words or totally grasp the concept, but she'd see this sister's love for her brother.

We sat on her bed and watched it together. I read the words out loud as Regan held up the slips of paper. "What's that mean?" Sabrina asked a bunch of times. Her main observation: "She has really long hair."

Afterward, I explained to her that the word "retarded" is a word people used to use to describe people with special needs, but now we don't use that word anymore because it's mean. I said that people still use that word when they think something is stupid, but that it's still a mean word to use.

She listened, and had no other questions. And then we were done—for tonight, anyway. Because this is a conversation we're going to keep having for many years to come.

Utterly random bits of awesome (including some very risque spaghetti)

This young woman from China is playing "Souvenirs D'enfance" by Richard Clayderman. Just look at her right hand go.

This is a video of the writers of Parenthood talking about the character Max Braverman on the series, who has Asperger syndrome (thanks to the wonderful Asha from Parent Hacks for the alert). As you may know, head writer/producer Jason Katims based Max on his life with his own son, who has Asperbergers. After the commercial, fast forward to minute 2:13.

The other week, I got to attend the Andrea Bocelli concert in Central Park, sponsored by Barilla and the grand finale of their Summer of Italy program. I was happy to bump into Nicole, one of the readers who won VIP tickets (hi, Nicole!). Here he is, singing Ave Maria. I know, beautiful. And, yeah, this is what a concert looks like to you when you're 5'2 and it's raining.

This vision of spaghetti chic was shot at a fantasy/science fiction convention, and shared by the amusing Karen from Walking The Borderline. I think I'm going to wait till Max is a bit older to show it to him. You know, like when he's 9. He's too young to start fantasizing about spaghetti-clad women.

Photo/Dot D

A broken wrist...and getting past hospital trauma

Yesterday, Sabrina wailed about her wrist all afternoon long. We'd gone to a little carnival at her school; while she was scrambling around in one of those inflatable contraptions, she went down a slide and landed on her left hand.

Sabrina's been going through a phase in which something seems to hurt every five minutes, so I had a bit of a girl-who-cried-wolf reaction. I gave her some Advil, but she didn't let up and that's when I started to worry. So after dinner, off to the emergency room we went. She wanted me to go with her; Dave stayed with Max.

I dread hospitals. I doubt there is anyone who loves them, aside from bacteria, but I have a flash of post-traumatic stress anytime I'm in one. I think back to those two weeks Max was in the NICU and I can feel that mix of panic, worry, devastation and grief rise up in me. I picture Max lying in his incubator, hooked up to all the tubes. I see the face of the pediatric neurologist as he tells us that our baby has had a stroke.

But the passage of time has helped, because for once I didn't picture anything Max-related when we walked in the doors of the E.R. I have a cold, and so the hospital scent didn't trigger a visceral reaction. I told the nurse at the front desk that I thought Sabrina might have fractured something so they fast-tracked us, which meant the entire stay only took about two hours, not bad for an E.R. visit. Sabrina was pretty chill except for when a technician took x-rays and made her move her hand a lot. It hurt to see her in pain.

Sabrina broke a bone in her wrist. "The best kind of break, if there had to be a break," the doctor said, because it's the kind to heal quickly. Sabrina has a temporary cast on, and we'll be headed to the orthopedist to get a real one.

"Is Max going to be up when we get back?" she asked several times as we headed home.

The second the car stopped in our driveway, Sabrina flash-unbuckled herself, jumped out, ran into the house and up to Max's bedroom.

"Maaaa-aaaaax, look what I've got—a cast!" she said in a sing-song voice.

She'd been a little jealous of his serial casting this summer, and now it was her turn.

Max studied the cast. "Ur-ul!" he said, and pointed to his own arm. He wanted a purple arm cast.

I tucked him in, and then Sabrina. And we were all just fine.

Worshiping with children who have special needs: Help me, G-d

Bringing a child with special needs to religious services sure can make you pray for salvation. We've tried, but Max hates crowds and refuses to sit there. He also doesn't quite understand what's going on. Usually either Dave or I end up up hanging with him in the playground, and the other goes to the children's service with Sabrina. The neurotypical kid's service, I should say.

At some point last year, I don't remember when, I had a hissy fit over the fact that our congregation does not offer any services or programs for kids with special needs. I emailed all of the clergy people. I got profuse apologies, calls, invitations to come in and talk.

I hate to say it, but I never followed up. I had too much going on. Also? For once, I would have liked someone to say, "You know, you are right, how could we have overlooked that? We will figure something out!" Instead of my having to go there, discuss it and make a case for it. I mean, really, what is there to talk about? There are no current programs in the congregation for kids with special needs. My child isn't the only one with special needs. Do something.

We've considered switching congregations, but haven't. We are not very religious about attendance, so to speak, and the matter hasn't come up again. Only next Thursday is the Jewish New Year, and we will be in temple. And once again, I am not sure what to do about Max.

Max has definitely matured, and we could try once again to seat him with us and pacify him with his favorite small toys, although I am not sure other worshipers would appreciate the rattle of Lightning McQueen cars. And I'd really like to be able to focus on my own praying. It's the purest time of reflection I get.

Last year's not-so-great solution was to place Max in the childcare center. The other kids there were all younger, though Max was perfectly content. The woman in charge was an amazing special ed teacher. Still, I wondered what good it was doing him to be there, as the rest of us prayed, and whether we should have left Max at home with his regular babysitter and gone without him. But that seemed awfully wrong.

Max is involved in a wonderful Sunday morning program, which helps him grasp concepts of religion. I discuss simple ideas at home, too. But in order for Max to participate in our congregation in any meaningful way, he'd need to be in a service for kids with special needs. That's not happening this year. And I'm on the line about what to do.

Show me a sign?

Do you bring your kids to religious services? Does your temple, church, mosque or center have programs for kids with special needs?

Photo/fmpgoh

Another job hazard of motherhood

For the last six months or so, this is what the tote I take to work has looked like. The lining, in case you can't quite make it out, is completely falling apart. There are threads hanging everywhere. If I tried to donate it to The Salvation Army, they would not take it.

"I think you need to fix that," said my friend Danielle a few months ago when I sat down on the train and placed my bag on the floor. I nodded. I thought about finding a bag repair place. Never did.

And so it goes: Another thing I haven't gotten around to doing. Along with the countless photos on my computer I have yet to make into prints. And the new books I want to order for the kids. And the baby gift I have to get for a friend. And the potted plant that needs more soil. And the burned out lightbulb in the playroom that needs replacing. And the friends I owe calls. And the new glasses I should order because my current ones are held together on one side with Scotch tape. And the school t-shirt form I only thought I filled out. And the bucket of shells I collected on our Captiva, Florida trip two years ago that I was going to make something with. And the pile of winter clothes that need to go into storage but, hey, here comes winter again!

And the Ironman Triathlon I want to complete!

He, he. Not on my list of the 29,351 things I need to do.

The work bag is getting particularly ridiculous, though. I'm at the point where I clutch it tightly to my body when I walk into the office building and ride the elevator. If I go to an event and someone says, "Would you like to put your bag down?" I'm all "No thanks!" It's become the black hole of my life; I've thrown stuff into the bag and thought that I'd lost it, only to realize that it had fallen into the no-man's zone between the lining and the leather.

It would not surprise me if one of these days, some kindly woman hands me a buck as I sit on the subway, bag in my lap.

Did I mention that I have a brand new tote sitting in my bedroom closet? Bought at a Coach outlet store. Classic brown. Good stuff. But using it would entail transferring all the crap in my bag to the new one. Another thing to do! Noooooooooooo!!!

I suppose I'll get around to dealing with my bag before retirement. Meanwhile, if you happen to meet up with me, please just smile and don't look into my bag.

$100 Amazon Kids Boutique shopping spree giveaway

I had no idea until recently that Amazon, my go-to source for everything in life other than therapy, had a Kids' Boutique. But they do. And it stocks some exceptionally adorable/cool clothes. See?

I have a $100 shopping spree for you at the Amazon Kids' Boutique! To enter, leave a comment about what color looks really great on your child. Max looks particularly handsome in navy (even if he does always want to wear purple), and I love green on Sabrina.

Bonus entries:

• Follow Love That Max on Twitter

• Like Love That Max on Facebook

• Mention this giveaway in your blog and share the link

• Tweet about this giveaway (one a day). A tweet: Win a $100 shopping spree at Amazon Kids' Boutique from @LoveThatMax, ends 9/29, http://tinyurl.com/3kskgs8

• Swing by and help me finish up back-to-school shopping. Kid-ding!

This giveaway is open until Friday, September 30 at 11:59 EST, and is for U.S. and Canadian residents 18 and older. I will randomly pick the winner at random.org, alert you by email and announce it here. Note, you must leave your email below if it is not visible on your blog.

Good luck!

Update: The winner is amyd. Happy shopping!

Little bits of inspiration

This is a page I ripped out of a recent New Yorker. It's a sketch of a Callery-pear tree that stands in the center of the plaza of the 9/11 memorial site, surrounded by 400 hundred swamp white oaks. Rescue workers discovered the burned stump after the attack; staffers at a nursery in the Bronx helped restore its health.

I've been resting this page on the computer keyboard at work when I leave, so it's there to greet me in the morning. I'm awed by the resiliency of that tree.

My other bit of computer inspiration is on a wrinkly post-it stuck to my home laptop. On it, a couple of years ago, I wrote down something I read in The Happiness Project book, by Gretchen Rubin: "The days are long, the years are short." It reminds me to really savor the kids, as hectic as life may get, because all too soon they'll be grown.

What photos or phrases inspire you?

Scheduling your child's therapy life sure can suck

Ever wish there were more days in a week, just so you can cram in more therapy sessions for your child?

Yeah.

Ever wish you had a secretary solely devoted to scheduling your child's therapy and doc appointments?

Hell yeah.

This has been on my mind since Friday, when I learned that a new occupational therapist I found wasn't going to be able to see Max, after all.

Background: A few months ago, I decided Max needed a new OT in his life. He's made progress in terms of using both hands more regularly (he tends to only want to use his left hand) and grasping things, like crayons. But I'd like to see more happening, and I thought a new OT would bring new tricks and observations to the table. I needed one who could come to our home, and they're not that easy to find—especially good ones.

I emailed friends and contacts, asked a few centers nearby, asked around some more. We found a good OT for the summer, but we weren't geographically desirable and she couldn't make it once September hit. Others didn't have time in their already-crammed schedules.

A mom friend had gushed about an OT who had worked with her son. Miraculously, she said could see Max on Fridays. I rearranged his other sessions—speech, music therapy, another OT. Zing, zing, zing—dozens of emails flying around as I tried to see if the other therapists could change to a different day. They all agreed to.

I was at work for the first session with the new OT, but we spoke on the phone afterward and she reeled off thoughts about stuff that could help Max. Including the fact that he needed more physical therapy in his life to help his arms, which don't have a vast repertoire of movement.

Friday, before her scheduled time, she called to say she could no longer see Max. She works in our school district and her supervisor said there was some conflict of interest in her seeing Max privately (even though Max goes to a school outside our district).

It wasn't her fault, not in the least, but I was very bummed and told her so. I am sure I sounded quite pathetic. Like I had just been jilted by a boyfriend or something.

She came over one more time, and gave more great suggestions—getting Max a slant board, for instance, to put on the table so that when he draws his wrist flexes upward (it tends to go down). She also showed me how to get him to hold a crayon the right way, between his thumb and forefinger, as opposed to the primitive whole hand grasp he tends to do.

I wanted her. I wanted her bad. But it was not meant to be.

I asked her to put out feelers with other prospective OTs and now, I am desperately on the prowl again. If I don't find someone who can visit Max on Fridays, I will have to rearrange his week all over again.

Good times.

And may I just say, ARRRRGH.

Dating was so much easier than this.

istock/Captainflash

A very powerful reason not to use the word "retard"

Friends, please check out the post I wrote on my parents.com blog, "Can the word retard kill? This murder might convince you." It's a horrifying story, and it makes you understand how demeaning words such as "retard" spread hate that can lead to harm.

What little things do you do for yourself?

These are my weekly $3.99 flowers from Trader Joe's. I get a bunch every weekend, without fail. The blend varies; this time around it's Gerbera daisies, roses and berries.

Buying myself flowers is one of the only things I do for myself every week, unless you count cups of coffee, plucking my eyebrows and bathroom breaks—and when the kids were little, let me tell you, I even appreciated bathroom breaks. The flowers are my treat during weeks crammed with work, chores, kid activities, going to therapy and doctor appointments for Max, scheduling therapy and doctor appointments for Max, rescheduling therapy and doctor appointments for Max (see a pattern here?).

Growing up, my mother always told my dad not to buy her flowers for their anniversary and other occasions. "They're a waste of money," she'd say, ever so sensible. For sure, that $3.99 could be going to lots of other things. When I do the math on what it costs a year, $200-plus on flowers seems kinda ridiculous.

But it makes me genuinely happy to walk into our back door and be greeted by flowers on the kitchen table. When I'm sitting there at night, in a stupor after a long day, the sight of them perks me up.

How about you—what sort of weekly treats are non-negotiable? And you are not allowed to say "showering."

Meet your pasta fantasy (recipe for lemon spaghetti included)

Yesterday, I got to attend Casa Barilla, the culmination of the Summer of Italy program. It's taking place in Central Park under a gigantic tent, and it is fascinating and fun and filled with pasta, pasta, pasta!

The event features four days of cooking and culture workshops and demonstrations by top chefs. Interactive classes include Italian Pasta Classics and Italian Coastal Pasta; I particularly liked Simply Healthy Italian Pasta with Chef Ivan Beacco, in which a group watched him make Gnochetti Sardi alla Nuorese (pasta with olives, salami, white wine, shallots and ricotta salata). I didn't have the heart to ask how to convince Max to try other pastas beyond spaghetti (spaghetti all the time is getting a little old for us, but not for Max), though I did ask him how to prevent pasta from sticking. "A little stirring, that's it," he said. Revelatory: He cooked the pasta with a steel colander in the pot. I am so getting one.

There are tasting stations...

...including one just for Parmigiano Reggiano, imported from Italy. One word: OMG.

The dining area

The Piccolini zone, where tots could make pasta and play games.

The humongous coffee bar. I love caffe macchiato, espresso with a splash of steamed milk. True story: I studied in Italy as a junior in college, and at first didn't realize that when you made a pot of espresso, you were supposed to drink a teeny cup of the stuff—not a gigantic mug of it. I was wired for weeks.

You can also pick up pasta, sauces, vinegars and cool retro tins in a shop.

This is exactly what's missing from Max's room: a pole filled with pasta.

Casa Barilla is happening through Friday September 16. The entry fee, $5 per adult, along with a portion of merchandise sold benefits the Food Bank for New York City. Check it all out (and register for classes) here.

Meanwhile, I snagged this genius spaghetti recipe, good for grownups and kids. Hopefully, it will help us break out of our spaghetti-and-sauce rut!

Barilla Lemon Spaghetti

Ingredients

1 box Barilla spaghetti

4 tbsp. extra virgin olive oil

1/3 cup freshly grated Parmigiano Reggiano cheese

1/3 cup freshly grated Pecorino Romano cheese

1/2 cup fresh lemon juice (from about 2 lemons)

3/4 tsp. salt, plus more to taste

1/2 tsp. freshly ground black pepper, plus more to taste

1 tbsp. marjoram, packed

1 tbsp. grated lemon zest (from about 2 lemons)

The how-tos

• Bring 6 quarts of water to a boil and add salt (optional).

• Whisk the oil, grated cheeses, lemon juice, 3/4 teaspoon of salt and 1/2 teaspoon pepper in a large bowl to blend.

• Set the lemon sauce aside. (The sauce can be made up to 8 hours ahead. Cover and refrigerate. Bring to room temperature before using.)

• Cook the spaghetti, stirring occasionally, until tender yet al dente, about 8 minutes. Drain, reserving 1 cup of the cooking liquid.

• Add the spaghetti to the lemon sauce, and toss with the marjoram and lemon zest.

• Toss the pasta with enough reserved cooking liquid, 1/4 cup at a time, to moisten.

• Season the pasta with more salt and pepper to taste. Transfer to bowls. Serve.

Grazie to Barilla for sponsoring Casa Barilla, and this post.

Prayers for a child who is gone too soon

I am sitting here at my kitchen table, tears pouring down my face. I just read about a blogger, Anna over at An Inch of Gray, who lost her son in a flash flood in Virginia over the weekend. He was 12 years old, a beautiful boy. Her previous post had been about her children's first day of school. A few posts down, fun-filled photos from a beach vacation.

Until you become a mother, you cannot comprehend what it would be like to lose a child. Tonight, I feel that mother's pain.

Please, all, say prayers for this child, for his mom and for the family.

What kind of artist is your child?

This is Alexis, age 13, from Arizona. The stunning piece of artwork to her left? That's hers.

It's called "A Day at the Beach" and features the different textures you might feel and touch at the beach.

Alexis is a student at the Arizona State School for the Deaf and Blind; she has a visual impairment, with limited sight. Her creation was one of two pieces selected to represent Arizona in the 2011 CVS Caremark All Kids Can CREATE exhibit (you can see all of the winners here). Its goal is to show people the impact art can have on the lives of kids and young adults with and without disabilities.

"Alexis's painting is beautiful but the thing about art is that it's about the process, not simply the product," says Dawn Smiddy, the educational specialist who's Alexis's teacher. "The act of making something can be a reward in and of itself. I work with kids who have low academic skills because of multiple disabilities, and for some it's just about rolling balls of clay and making little snakes. They feel so good about that."

Here's what the young artist had to say:

How old were you when you first started drawing?

I was about three years old. I used to make drawings and put them up in my room.

What are your favorite mediums to work with?

Crayons, paint and markers!

Can you tell me a little bit more about your Day At The Beach painting?

I've never been to the beach, but I imagine that's what it would be like. I included pieces of glass and seashells, and I choose the colors—I can see them.

What's your next painting going to be, do you think?

The colors of the rainbow! I like to draw rainbows.

What do you do in your spare time?

Listen to music and hang out with friends.

What would you like to do someday when you're older?

I don't know! Half of the time I like to draw, and a lot of the time I like to write.

What words of advice do you have for parents of kids with visual or other impairments?

Just keep encouraging kids to use their imagination. Every kid has a good imagination.

Great advice! Lately, Max is into painting. He particularly enjoys bringing home styrofoam cups and bowls from ice-cream shops and painting them purple, a whole new genre of art. Someday, I am sure, his styrofoam pieces will be sold for millions in art galleries.

What sort of creations is your child into these days?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to making life better for children with disabilities. "Like" them on Facebook!

Ignorance is bliss

"Ignorance is bliss" was just a phrase, until I had Max. Back then, those words suddenly seemed cruel, and personal. Ignorance was torture. It didn't seem at all blissful that Max had cognitive delays and couldn't seem to grasp things other children his age were understanding. Once, when he was a toddler, a relative slipped and called him "simple-minded," and I lost it and shouted my head off. Partly because I was furious, partly from fear because I wasn't yet sure it wasn't true.

Yesterday, 9/11, Sabrina caught a few moments of the victims names' being read off on TV. We talked a bit about what she'd discussed in school—the bad people who had destroyed buildings, the hurt people the heroes.

Max wasn't interested in listening. "Bad people" is a concept that's beyond him right now. And you know what? I had no issue with that. I know that Max's mind is bright, fertile, and full of possibilities (and purple). He is far from simple-minded or ignorant—just unaware of certain things, as of yet.

Max will someday understand 9/11, and much, much more. For now, he is the happiest child I have ever known, he is making progress, and he is learning a whole lot every single day. He is not aware of what he doesn't know. Ignorance is bliss...and that's OK.

Do you know what I mean?

Where where you on 9/11?

The events of 9/11 are forever seared into my mind. That Tuesday, I was crossing the Hudson River on a ferry when the Twin Towers came into view. Before I left home, I'd heard Katie Couric on the Today show mention one plane had hit; the ticket seller told me about the second plane. Still, I headed into work. I was on the top deck, me and a handful of other passengers. Thick smoke billowed out of both buildings. We stared in horrified silence, but we had hope; it seemed like the fires could be put out.

I went to work. I cried as I watched the towers collapse on the TV in the office conference room. I took the ferry home to Hoboken with throngs of people, the only way out of New York City. At the terminal, emergency workers were hosing down people who had been in the World Trade Center area, for fear of chemical warfare. Fighter planes flew overhead. "There's a bomb!" someone yelled and suddenly we were all running. I went home. From our building's rooftop, Dave and I watched smoke rise from the smoldering ruins. The Twin Towers had, incomprehensibly, become a graveyard.

For weeks after, there were flyers all around town for missing young men and women; Hoboken, N.J. had many residents who worked at The World Trade Center. The full number of people who died in the towers and planes, 2753, would come much later. Plus 224 dead in the Pentagon and in Pennsylvania. Even this weekend, I read horrifying new stats: More than 1600 people lost spouses or partners in the attacks, and 3000 children lost parents.

Sabrina's school had a ceremony on Friday where they spoke of angry people who didn't use words, only bad actions—airplanes to hurt people in buildings. They also discussed the people who did use kind words and actions, people called "heroes." Sabrina didn't want to talk about it at home, and I didn't push her. Max is unaware; someday, when he is ready, I will tell him.

This whole week, I've been reading articles online: about the events of that day, the memorials, the people who died. I found out that one of the passengers on Flight 93, Colleen L. Fraser, was a nationally-known advocate for the disabled who'd helped draft the Americans With Disabilities Act. Tomorrow, I'm going to a local ceremony where a monument will be dedicated to the victims.

I remember thinking on 9/11 how grateful I was that I didn't have kids to explain this to, and that I was free to sob uncontrollably.

What do you remember about 9/11? Where were you on that day?

If you lost a loved one, my thoughts and heart are with you.

$100 Target shopping spree giveaway

Confession: I am not very good about photo traditions. I mean, I take shots of the kids all the time—I'd do it in my sleep if I could—but I've never been very organized about capturing them in the same exact same place and time every year, as other moms do. You know—kids holding up a cute sign with the school year, standing in front of a pumpkin, whatever. The only regular thing we do is get professional pictures of them taken every fall.

This year, though, I have started a bona fide photo tradition. OK, posing the kids on our front porch or bus steps isn't very creative, but I can definitely see how much the kids have grown (and, in Dave's case, shrunk).

2010

2011

2010

2011

That outfit is just about as dressy as Sabrina gets these days; she didn't even want to wear the nice sweater she'd planned to. Sure enough by the second day of school, she was back to wearing one of Max's plain short-sleeve t-shirts and a pair of shorts. "Don't you want to wear something a little nicer?" I asked. "No," she said, firmly.

Max is far easier, because while he generally prefers purple clothes, he really doesn't care that much about what he wears. Every season, I hit Target and swoop up a whole bunch of Cherokee clothes for him (which he's wearing here). They fit well and they're durable, especially the jeans.

Want some money for back to school clothes? I have a $100 Target gift card to give away! (Dog not included.)

To enter to win it, leave a comment about your approach to photographing the kids—catch as catch can? Any annual traditions?

Bonus entries:

• Like Cherokee USA on Facebook

• Like Love That Max on Facebook

• Tweet about this giveaway (one a day). A tweet: Win a $100 Target gift card for @cherokee_usa clothes, via @lovethatmax. Ends 9/19, http://tinyurl.com/4x7vr5y #giveaway

• Follow Love That Max on Twitter

This giveaway is open until Monday, September 19 at 11:59 EST, and is for U.S. residents 18 and older. I will randomly pick the winner at random.org, alert you by email and announce it here. Note, you must leave your email below if it is not visible on your blog.

Also! Want to win $1000? Cherokee is having a First Day of School Photo contest:

To enter, like their Facebook page, click on the "First Day Of School Photo Contest" link in the left column, and upload a shot of your child on his or her first day of school. You could score $1000 in Cherokee clothing and a $300 smartphone from Cozi, a free online organizer to help you manage family life. The contest ends September 30.

Good luck!

UPDATE: The winner is Tabathia. Congrats!

Thanks to Cherokee and Cozi for sponsoring this giveaway.

Things that go klomp in the night

KLOMP

KLOMP

KLOMP

KLOMP

Every night, around 1 a.m., I wake up to that sound.

KLOMP

KLOMP

KLOMP

KLOMP

My heart races and it takes me a sec to remember what's happening: It's Max, aka Big Purple Foot. He's wearing his night cast, and klomping toward our room in it.

KLOMP

KLOMP

KLOMP

KLOMP

At 8 years old, nearing 9, Max is kinda old to be crashing in our bed. But my willpower is weak at 1 in the morning. And lately, I don't mind the cuddling (aside from when he kicks me in his sleep).

"He's looking like a big kid lately," a babysitter said to me the other day.

"He's still got those pinchable cheeks!" I said, hopefully, trying to talk her out of it.

"Yes, but he's definitely looking like more of a big kid," she repeated, and I had to agree.

Max, my sweet Max, is getting older. And I am not ready to let go of his early childhood. In part, it's because I feel like I missed out. Anxiety and worry consumed me when Max was very young, and stole joys of motherhood away from me. I did not savor Max's deliciousness as much as I could have. I did not photograph the rolls on his chubalicious thighs, like I used to do with baby Sabrina. I did not goo and coo over his meaty little hands, as I still do with Sabrina, because I was too freaked about how stiff and tight they were from the CP. I did not take comfort in his beatific smiles.

The happiness came, of course. But I think I'm still trying to make up for lost time.

So for now, I will startle when I hear the KLOMP KLOMP KLOMP KLOMP, anticipate seeing Max's shadowy form appear in the doorway of our bedroom, pick up his warm body, lay him down next to me and kiss that last bit of chub in his cheek as he nods off to sleep. Because before long, I'll no longer be able to do it.

A place where we can all relax

One of the ongoing challenges in my life is finding stuff for all of us to enjoy as a family (well, that and laying off carbs, but that's a whole other story). Max has come a long way in dealing with crowds; still, they unsettle him. It takes him a while to get used to somewhere new, and we often have to visit several times before he'll go without wailing. Some places like sports arenas are off-limits, no matter what kind of sound-blocking earphones he's got on. Although Max loves Chuck E. Cheese's, one of the most insane places on the planet. Go figure.

Family outings have been known to leave me in tears too. It's a combination of the screeching, which gets under my skin, and the ache to be more like families around us who seem to be effortlessly having a good time. I want to go somewhere and not have to contend with meltdowns, stares or a shattered Sunday afternoon.

The beach is our haven, one of the few places where we can all kick back. There's no angst or drama, other than when the kids want to have a third round of ice-cream and yes, we let them have two. Max adores a beach a couple of hours from home that we discovered a few years ago.

The fun starts with the drinking fountain at the entryway. Then there's a long, wheelchair-accessible ramp to zoom down to the beach on.

This time, I brought along a couple of kites I'd grabbed at CVS, where they were on sale for a buck each. I got Max got a Lightning McQueen one, and he thought I was The Best Mommy Ever.

I was so thrilled to see him holding the kite on his own and lifting an arm up high, no easy feat because both of them tend to be stiff from the CP.

Max was mesmerized.

One guess as to which kind of kite Sabrina got.

Drum roll, please...

Monsieur SpongeBob, of course.

On the beach, we're all at ease. Dave and Max like to just stand on the surf and let the waves wash over their feet.

Max told me he was spelling "Sleep at C's house."

I get to take lots of pictures, a hobby I don't always have much time for. I am obsessed with Sabrina's little hands, which still have dimples where knuckles should be. I'm always kissing them.

I kiss all of her freckles, too. Well, as many as I can.

On the beach, I'm never wistful about the good times other families are having...because we are one of those families, too.