If only everyone saw him like his baby brother does

The baby wakes up first in our house, followed by Max, who goes into his room. As I'm lying in bed, half asleep, I hear Max making noises and Ben laughing. It is one of the best sounds I've ever heard.

The kids each have their own special relationship with Ben. He always has a squeal for Sabrina when she walks in the door at the end of the day, and loves to be held by her—so much so that sometimes he'll cling to her and refuse to come to me. Lately, she walks around the house with him as he toddles like Frankenstein, clutching her finger.

Ben likes to poke at Max's face—his nose, his cheeks, his eyes, his hair—and Max gladly tolerates it. Max is really great at picking up stuff Ben drops off his high chair, which happens approximately every 3.5 seconds. Lately, he is trying to teach him to talk. "Say 'thank you!'" Max requested the other day, after I gave Ben lunch. Ben just grinned.

Sometimes, Max and I stand there and laugh delightedly at Ben, who has taken to saying "Yeah!" when you ask him a question. It's his only word, and it is far better than "No!" We are pretty sure Ben doesn't know exactly what's being asked, but he does get that when you hear a question, you give a response.

Oh, and the kisses: When Max leans over to Ben in his high chair, Ben will open his mouth and plant his lips on Max's cheek. I could keel over from the cuteness.

Ben doesn't think that his big brother talks funny or acts different. He doesn't feel sorry for him. He'll grow up thinking that he's just Max. Sure, there will be questions down the road but his concept of Max will not change: that he is a cheerful, big-hearted, animated guy with an infectious giggle. Who fights with him over his fire trucks.

Sometimes, when I watch Ben gaze adoringly at Max, I wish that more people could see Max for who he is, instead of mainly seeing his disability.

A new description of what Max has

"You know what I'm going to start telling people Max has when they ask?" Sabrina randomly said yesterday morning.

"What?" I asked.

"A sense of humor," she said.

"I love that," I told her. "It's a great description of him."

*Swoon*

If only everyone could see past his disabilities—or accept them as being a part of who he is, not the whole.

On explaining special needs to a sibling: another conversation with Sabrina

"You're so smart!" I tell Sabrina. It's bedtime, and she's just aced an online spelling test.

"Am I smarter than Max?" she asks.

"Max is smart, too," I tell her.

"How is he smart?" Sabrina wants to know. "He can't talk!"

"Yes," I tell her, "he can talk. He just does it in his own way."

Pause.

"Remember we've talked about the condition Max has? Do you remember what it's called?" I ask.

Sabrina doesn't remember.

"It's called cerebral palsy, and it affects how your muscles work," I explain. "There are muscles all over your body. Your tongue has muscles, too. And when you have cerebral palsy, sometimes your tongue can't quite move to make certain sounds. That's why Max has trouble saying 'p's' an 'b's' and other sounds."

"He says 'Daddy' very well!" Sabrina notes.

"Yes, he does!" I say (and hold back from pointing out that he says "Mommy" pretty darn well, too).

"If his muscles don't always work well, you have muscles in your eyes, so why can he blink OK?" she asks.

I am continuously bowled over by this child's questions.

"Certain muscles in his body work better than others," I offer, and she nods.

And then:

"OK, I have a question that's sort of about this but not! You know how if there is ever an emergency I should call 911? What happens if you and Max are home?"

At first, I'm not quite sure what she's getting at. And then it dawns on me.

"You want to know what happens if Max needs to call 911 because something happened to me?" I ask.

Sabrina nods.

Another pause, and my heart is hurting just a bit. "Well, Max doesn't yet know to call 911, but he will soon. Because he's smart," I say. "And you don't need to worry, because nothing will happen to me."

And that's that, and she goes to sleep, and then of course I replay the conversation in my head for the rest of the night. Did I say the right thing? Should I have brought up more? Did she absorb it? Did she sense how much I struggled to give answers?

These conversations are so important to me. I know Sabrina is increasingly processing what it means to be a kid with special needs, and what it means to be the sister of a kid with special needs, too (she's come a long way since she used to describe Max as "He needs special needs!"). And I want to make sure she's getting a clear message and really understanding.

I usually let the conversations happen organically, and I never force anything. They often crop up at bedtime, or when Sabrina and I are out and we see a kid with special needs. At times, I've gotten choked up, especially when we talk about Max's birth. It remains my biggest tender spot.

I fell asleep thinking that I did the best I could—my usual approach toward raising a kid with special needs.

A special kind of sibling torture

You might think this is a scene typical of many family bathrooms—a chain of cars stuck to tiles, the sort of design a kid would make during tub time. Actually, it is a form of Sabrina sibling torture.

Max can't raise his arms very high because they're stiff (thank you, cerebral palsy). So usually, he'll line up cars way at the bottom of the wall, where he can reach them. Sabrina likes to dart into the bathroom when he's not around and arrange them up high out of his reach. When Max pulls open the curtain at night for his bath and sees this arrangement, he screeches. It's sort of like the shower scene in Psycho, but not.

There's the standard sibling teasing and tormenting. But then there's the kind directed at a sibling with special needs, the kind that involves Sabrina doing things that target Max's physical challenges. Like when she holds toys up and out of his reach. Or when he wants her to write "Max" on a drawing he made and she writes "Sabrina." Or when she gives him a barely perceptible shove and it totally throws him off balance.

I've had conversations with her in which I've explained she has to be kind to Max because she's his sister and and he needs a little extra help, love and caring.

They don't seem to have penetrated.

Sabrina did attend her very first Sibshops session last month. There were about six other little girls there, and I dropped her off then returned three hours later. They did some crafts and played games geared toward opening up conversations about siblings—like "Popcorn," in which the girls sat in a circle and each wrote two things about themselves and two things about their siblings on slips of paper. They crumpled them up, threw them into the center, and then took turns picking papers and discussing stuff. Sabrina's words about Max (can you guess?): "purple" and "spaghetti."

It's gonna take a lot more Sibshops and maturity for her to chill. I'm a little scared because I basically didn't stop torturing my sister till I went off to college. Hopefully, things will be different between Sabrina and Max because there's a very different sort of dynamic.

Meanwhile, they have the occasional tender moment. We got Max a Cars 2 Look and Find book, where you have to pick out objects in a sea of images. They've been sitting on his bed at night and examining it together, and he's doing just as well as she is spotting things. "Good job, Max!" she says.

At times like those, I feel melt-y. And then I'll hear her shouting out to him, as they fall asleep, "MAX! NO SPAGHETTI FOR YOU EVER AGAIN!"

Love, love, love that Sabrina

"How does Sabrina feel about your having a blog called Love That Max?" a blogger friend recently asked me. My heart lurched. Nobody had ever asked me that (not that I haven't thought about it). "Well, she isn't yet aware that I blog about Max," I said, and left it at that. And then I kept thinking about the question for the rest of the day.

Sabrina may not yet be clued into the blog, but she is very aware of the fact that Max gets extra attention, and she's always trying to get in on it. For one, she likes to crash his therapy sessions at home. I don't blame her—they're a blast! Max and the therapist hang, toss back a few brews, play air guitar. OK, that's not what happens at sessions. They drink wine. Anyway, usually it's fine for her to join in, although if Max really needs to concentrate we have to lure her to the basement playroom to get out of his way (he usually does his occupational and speech therapy sessions in his room).

Since we got Max's new purple night brace for his right foot, Sabrina's been coveting it. Like she needs to accessorize or something. Last night, I let her try it on and she clonked around in it and Max thought that was a laugh riot. She is also madly jealous of Max's iPad. She knows that he gets to have one because he uses it for speech purposes, but really, he uses it a lot to watch YouTube clips of car washes. "See?" she'll say. "He's just having fun! I waaaaant an iPad too!"

Sometimes, Sabrina helps care for him. She'll wash him in the bath and shampoo his hair, although she does charge him extra for pedicure services.

On days when they like each other, they do this for fun.

Last week, while Max was away, we gave Sabrina lots and lots of attention, including the all-day Fourth of July celebration. It was her first week at camp, and at night when she came home, we went out for ice-cream and talked about her day. It was a big week for her: For months now, she's been tugging at various teeth and telling me they were loose (they weren't), and then suddenly one really was. It hung in there for a few days and fell out at camp.

Sabrina still pronounces words with "th" as "f" so she keeps saying "MY TOOF FELL OUT! MY TOOF FELL OUT!" Which makes me want to hug her and never let go. Also, she gets these freckles during the summer that another mom described as looking as if someone has sprinkled cinnamon on her cheeks. Yum.

I'd gotten this adorable fabric tooth holder from my friend Megan, mom to Sadie Marie (her Etsy shop will be open again in a few weeks). Sabrina tucked it under her pillow. And then—parent nightmare!—Dave and I both conked out early, and Sabrina woke up earlier than usual. At 6:07 a.m., she marched into our room and said, "The toof fairy didn't come!" I kept my cool and said, "It's too early, she likes to sleep late on weekends." Then we tucked in some money as Sabrina hung out in our bed. She says she is saving up for a convertible. "Will you give Max rides in it?" I asked. "Yes," she said.

When I decide to explain this blog to Sabrina, and I probably will this year, I am hoping she'll understand why it's called Love That Max and mostly about raising him, even though I also write about her. It's tricky, because I've tried to help her see that Max is just like other kids, though he may do things in different ways or take longer to do them. But hel-lo, I have an entire blog dedicated to what it's like to raising a kid with special needs. Still thinking on that one.

Later this month, I'm taking Sabrina to her first workshop at The Sibling Support Project, a national network of programs geared toward brothers and sisters of people with special needs. I think it'll be great for her. Me, I'm planning to ask the workshop leader some questions about getting Sabrina to stick up for Max in front of other kids, something I've struggled with. The other day, Sabrina was at a friend's house and I brought Max to pick her up. Sabrina, her friend and the friend's little sister ran upstairs and locked themselves in a bedroom. "I don't like Max," I heard the friend's little sis say. Sabrina didn't say a word.

Also: I'd love to know how to get them to stop fighting/maiming each other in the back seat of the car, though I'm not sure they can help me there.