Tuesday, May 31, 2011

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?

Monday, May 30, 2011

Raising kids with special needs: The girl next door

Summer's almost here, and I know it because A. is singing in her backyard. She lives next door to us and every year, she starts her solos around Memorial Day, usually in the early evening. I watch her from our back door. She stands beneath a giant oak tree, always alone. I'm never quite sure what she's singing, but her voice is clear and mesmerizing. She holds a microphone in her hand and raises it high at times, as if she is dedicating songs to God.

A. has Down syndrome. She is in her early twenties, and gives me the biggest wave hello whenever she sees me. She is the last of 16 children. After Max was born, I hoped that we might glean words of wisdom about raising him from her dad, Mr. R. Over the years, though, he's mostly just told us how impressed he is with Max's progress. "Hey there, Max, looking good!" he'd say from his front porch as Max wobbled by on his walker and then, later, on his adapted tricycle and these days, on the green tractor he drives like a demon.

I don't see A. that much. Every morning, our state's transportation service for the differently-abled arrives to take her to work shortly before Max gets on his yellow bus. I am not sure where A. works now. She used to help out at a frame store, but I think she switched jobs. I can always count on seeing her Halloween night, because she is a diehard trick-or-treater who seems to rack up the most candy in our neighborhood. Mr. R. is famous for giving out full-size candy bars.

Before I had Max, I felt sorry for A.

Now that I have Max, I don't feel sorry for her at all.

I notice how good her speech is and all the activities she loves to do, including playing croquet and growing a vegetable garden. I see how happy she seems, and how loved she is.

Our families are the only ones in the neighborhood with kids who have major special needs. I find it comforting to have A. next door. It makes me feel less alone.

I look at A. and wonder if I am seeing the life the future holds for Max. I'd like to know what Mr. R. and his wife have planned for her after they're gone; they are in their late seventies, maybe even early eighties. With all those siblings, surely one will be there for her.

Tonight, though, A. is singing in her backyard, I am watching her, and she is perfectly content.

It is good to have her there.

Can you understand why?

Thursday, May 26, 2011

Best giveaway ever, says Max: Win a $230 Cars 2 Road Trip Survival Kit

Max likes me enough, but I sometimes can't compete with his affection for Lightning McQueen. He has loved that car, and the movie, since it came out. "Lightning McQueen" was the first two-word phrase Max ever said. We've worn down at least two Cars DVDs. That scene in the move in which McQueen is talking to himself and saying "No, No, No" and then "Yes, Yes, Yes" cracks him up every time.

The other week, I asked Max if he'd like to go see Cars 2 in a movie theater when it's out. Max has never seen a movie in a theater; he freaks out. Our area has an AMC theater with sensory-friendly screenings for kids with special needs, and I might try that though I'm not sure Max will be into it. Getting a big box delivered to your house with a Cars 2 Road Trip Survival Kit gift, however, is a different story. It arrived just in time for our beach getaway. Max was in shock at first. Do you think Sabrina has a future as a game show host?

Word, all summer long when you buy Kleenex, Cottonelle, Pull-Ups, and other Kimberly-Clark products featuring Cars 2 labels, you'll get codes you can redeem for Cars 2 goodies. Meanwhile, I have one Cars 2 Road Trip Survival Kit to give away. It's worth $230 and includes:

• A Die Cast Character Car
• Cars Giant Color Pages
• A Disney Cars 7" Portable DVD Player
• An original Cars DVD
• Disney Cars Pool Tumbler with Straw
• (2) Cars reusable totes
• Cottonelle Moist Wipes
• Cars branded Scott Extra Soft TP
• (4) Kleenex pocket packs
• Cars branded Pull-Ups
• (1) Cars branded Viva paper towels

To enter, just leave a comment about your favorite road trip—either with your family or with your family growing up or both! I have wonderful memories of visiting Stockbridge, Massachusetts with my mom, dad, and sister, and of picnicking at Tanglewood as we listened to classical music. Dave and I took Max there as a baby, and I remember people asking what I fed him because he was so chunkalicious.

Bonus entries:

Follow Love That Max on Twitter
Visit the K-C Cars 2 site then mention below what you'd like to get by redeeming codes
Like Love That Max on Facebook
Mention this giveaway in your blog and post a link
Tweet about this giveaway (one a day). Here's a tweet: Win a $230 Cars 2 Road Trip Survival Kit (with a Cars DVD player!) from @LoveThatMax, ends 6/6, tinyurl.com/3rwxn90

This giveaway is open until Monday, June 6 at 11:59 p.m. ET and is for U.S. residents 18 and older (and their Cars-happy kids). I will randomly pick one winner, alert you by email and announce it here.

Now, can someone please help me tear Max away from his Cars DVD player?

Update: The winner is Meredith, commenter #413. I hope your family has a blast!

Wednesday, May 25, 2011

Those Special Needs Mom proud moments

It's late Sunday afternoon, and we've just arrived at a diner with a bunch of family. We weren't sure Max would be into it; he's only been to this restaurant once before and he tends to only like familiar food places, and ones that aren't too loud.

Everyone heads to the table except Max and Dave. We sit down and I watch the two of them through the window, strolling around the parking lot. I ask the waiter to find me a purple (obsession no. 1) crayon and a red one too. Then I call Dave on the cell. "Bring him inside, I'll meet you," I say, and head back to the entrance. Max stays with me there and Dave walks back to the table.

I stoop down and give him a big hug. "Max, there are purple crayons here!" I tell him. "Do you want to draw some pictures of spaghetti?" (obsession no. 2).

"ESSSSSSSS!!" ["YESSSSSSSSS!"] says Max, and he lets me lead him back to the table.

For a few minutes, we draw pictures of plates of purple spaghetti (and a swirl of red sauce) with the words "Max eats spaghetti sauce" written at top. Mostly, Max wants me to do the drawing; it's not easy for his hand to grasp the skinny crayon. Finally, he makes some squiggles, and gives me an "I did it!" glance of triumph. Then I sing him a couple of songs, tossing in the word "spaghetti" as much as possible, which cracks him up. "Old MacDonald had some spaghetti....." and "It's raining spaghetti!" (sung to the tune of "It's Raining Sunshine," as he's got a crush on iCarly). And then, a bowl of chocolate ice-cream (he had a late lunch, so he just wants dessert). Dave feeds him so I can down some food.

"I'm very impressed with Max," says my brother-in-law Lee. Yes. But actually, I am kind of impressed with me for keeping the calm.

For most of life, I'm too busy doing things—or too immersed in worries—to give myself props for mommy-ing Max. Actually, the same is true for mommy-ing Sabrina, who comes with her her own challenges (most of which involve a stubborn streak the size of Texas). But Max gives me a certain kind of parenting insecurity. Plenty of times, I'm just not convinced I'm doing the right thing or helping him as much as I can (and I suspect I am not alone here in feeling this way about my child). I swear, I'd like my tombstone to read "She did enough."

Every once in awhile, though, I feel really good about stuff I've done for him. Like when I've been able to keep him from freaking out, as I did at the diner. Or when I make him laugh really hard. Or when I teach him to articulate new words. Or when I coax him into doing something that's challenging, like climbing up the stairs without my holding onto him (but you bet I've got his back). These are the moments when my mom pride shines through.

Of course, I also love it when people tell me how handsome he is...and that he looks like me. He, he.

How about you: What moments give you mom pride, the ones where you think, yeah, I am doing a good job? Have you had one recently?

This is the third in a series of posts sponsored by P&G, for whom I'm covering The Special Olympics—they're a sponsor. "Like" their Thank You, Mom Facebook page and they'll donate $1 toward Special Olympic Team USA's journey to the World Summer Games in Athens.

Kids with special needs: It's not me, Mom, it's YOU!

The other morning, Max and I were lazing out in bed, neither one of us wanting to start the day. He pointed to something out the window and said a word.

I had no idea what he was saying. It sounded like "air-ay."

"What did you say, Max?" I asked.

Max said the word again.

His iPad was downstairs, and I wasn't getting up to get it. (See "lazing out" above.)

I took a guess: "Are you talking about Caleb?" I asked (his bff). He pronounces Caleb in all sorts of ways; the "c" and the "b" are difficult for him to say.

"Noooooo," said Max, and said the word again.

"Sweetie, I'm not understanding you," I said.

Max leaned over close to my face, looked into my eyes and said, "AIR-AY."

I still wasn't getting it.

"Max, what?" I asked.

This time, he leaned over to my ear and practically shouted "AIR-AY! AIRRRR-AYYYYY!"

Max didn't think I wasn't getting what he was saying; he thought I was having trouble hearing him.

It took me a few more tries to figure out the word was "airplane" and that he was telling me that he'd like to take a plane trip somewhere, and could I please make that happen? "Yes, Max, we'll go on a plane trip this year," I said.

"AH-EH-EEE!" he said.

"Yes, we'll eat spaghetti on the plane," I promised.

Obviously, I want Max to be able to communicate clearly with me and others. The iPad's been a game changer (and very helpful for exchanging words with hearing-impaired friends); his speech should grow more intelligible over time. But I also hope that Max always takes this approach to life:

He's not the one with problems. He's not the one with the challenges. Au contraire: It's me and anyone else "typical" who has trouble understanding him.

Tuesday, May 24, 2011

A shocking video to get people to quit saying "retard"

"I call my nieces retards and they love it. Retard is a term of endearment."

That response to my little campaign against the use of the word "retard" on Twitter haunts me, along with other negative ones it received. The level of insensitivity and ignorance was extreme, and the name-calling was the least of it. People got up in arms—and downright defensive—about being asked to reconsider using a word that is so offensive to parents of kids with special needs, people with disabilities, and people in general who have a heart/brain.

There's no ignoring the new public service announcement, "Not Acceptable," from the Spread the Word to End the Word campaign. It's airing tonight during the Glee finale, but you're getting a first look here.

I am all for the shock treatment when it involves a cause like this; clearly, some people need it. Do you get it now? I'd like to ask naysayers. Do you? It's a nasty word, a slur like other words you'd never use. Would you say "retard" at work now? Would you say it in front of your priest or rabbi now? Would you say it in front of your mother?

I hope this PSA has the effect it's intended to have. Besides Fox, MTV, TNT, CNN and several other networks have committed to featuring it. The more we can get the conversation going about this word, the more awareness will be raised. And the more awareness raised means the more people will think twice about using "retard" or "retarded." Even if you dig in your heels, even if you call your nieces "retards," you will surely have some pause the next time you say it.

What kind of reaction did you have to the video?

Update: A year after this video aired, I made one of my own, Would You Call My Child A Retard? Check it out here

Sunday, May 22, 2011

Stuff for kids with special needs: lots of good finds

So, after worrying that I'd gotten too sucked into Special Needs World, what do I do? I spend the better part of a day at Abilities Expo, which is all about services for kids with special needs and gear for kids with special needs. No matter what sort of inclusionary activities I end up doing for Max, he needs certain help and equipment to better his life—and I got some great ideas there.

The expo's being happening for decades around the country, but this was my first one. It featured 160-plus exhibitors, with every resource you can think of except an extra pair of hands, which I could really use. Besides companies selling products and services, there were organizations that promoted disability rights and awareness, reps from the state's disability group, even lawyers who specialized in disability discrimination.

Ripley, an assistance dog from Canine Partners for Life. His owner told me about a little boy whose parents had never heard him laugh until the day he met his assistance dog. They currently have prisoners training some of the dogs, a good thing. I think?

Freedom bike (rubber ducky included!)

Booster seats from Special Tomato, for your child's fine dining pleasure. That's their Soft-Touch Sitter in the photo on top (child not included).

A Kidwalk Dynamic Mobility System that should come with a license tag that reads "Outta My Way!"

The Honda Odyssey Entervan—a conversion by BraunAbility.

A Toyota Sienna with an Auto Access Seat. I am not sure the gentleman was entirely amused by my question but I was loopy after visiting so many booths (as if you couldn't tell by my maniacal laugh). Our Sienna is three years old; if this were an option when we bought the car, I would have considered it. Right now, we can lift Max up into the car, but that boy is getting big (thank you, chocolate ice-cream).

A bath seat from Otto Bock Kids. I think these are actually a cool idea for any human being, no? Couldn't you use one, a soak in the tub, and a glass of Pinot Grigio right about now?

Chaz the Pinball Wizard at a wheelchair-height adapted machine from U Can Do. How cool is that? If we ever got one, there is a risk Max might never again emerge from our basement.

A new Rifton chair, out in July.

There was a gigantic assistive technology area where people could try out devices—ipads, Dynavoxes, you name it—and get advice.

There was even a pavilion for free wheelchair tune-ups. Some people took their chairs directly to the manufacturers' booths for tinkering.

This expo is free; there are several held around the country every year (New York Metro, Chicago, Houston, San Jose, Atlanta and Los Angeles). The attendees were a mix of parents and their kids and adults who have disabilities. I didn't take Max because of his issues with crowds, which was a good thing because I would have ended up with a pinball machine in my trunk. Besides all the great info you'll walk away with, there's also discounts on stuff, with some companies continuing them for a set period of time after the fair.

If there's not an Abilities Expo near you, why not email the Expo peeps and suggest it? The president of the company is David Korse, and his email is dkorse@abilitiesexpo.com. Or ask your school if they'd be up for hosting a similar fair with local therapists and vendors and manicurists.

What sort of stuff are you in the market for these days? I'm looking to get Max more waterproof (aka drool-proof) shirts; there was a booth selling some and I may be trying them out, I'll let you know. I'm also looking for a device that will keep Max from walking into our room at 3:00 a.m. and insisting on crashing in our bed. I believe that device is known as "willpower" but I lack it at that hour. We've ruled out a bouncer, as that could get costly. Pinball machine?!

Thursday, May 19, 2011

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.


Wednesday, May 18, 2011

Therapy and special needs: 11 ways to have a good relationship with your child's therapist

1. When your therapist walks in the door, do not say "So glad you're here! Gotta go get a smoothie/a new pair of shoes/a life, see you in forty five minutes!"

2. Have an annual or biannual Child State of the Union, a conference call between you and all of the therapists—speech, occupational, physical, the whole gang. They'll each work better knowing what the other person is up to. (Note, your shrink does not have to participate in this call.)

3. You know it's true: Therapy takes three people—the therapist, your child and you. Therapy sessions in and of themselves do not produce miracles, but combined with the exercises and tactics you put into use, they can.

4. That said, if you're feeling overwhelmed by all the stuff you've been asked to do with your child, say so. Better that than pretend you have actually done it all. Not that any parent would ever do that. Noooooooooooooo, not us.

5. If you're not convinced that a particular tactic is effective, be open about your concerns—but be open-minded to the way the therapist works, too. Out-of-the-box approaches can go a long way for our kids.

6. Word, it is best not to request things like "Could you show him how to prepare a four-course meal?" and "Do you think you could teach him how to hold a vacuum?"

7. Keep a notebook where your therapist can jot down progress notes, a helpful record for both of you (and a must for working moms). Refrain from drawing little hearts or sad faces next to her notes.

8. Also: Do not kiss her—or him—on the lips when your child does something incredible, although it is OK to squeal and/or do cartwheels.

9. Once in awhile, show the therapists print or online special needs equipment catalogs and see if there is anything they recommend or would like to try. So many of them spend their own money on stuff; it's nice to pitch in, and it's a good way to find cool stuff that'll work for your child.

10. If you capture your child's first steps or first words in a photo or a video, or your child finally grasps a crayon and colors a picture, share it with the therapists. Way to make them proud!

11. Patience! Yes, it's so hard to have because you so want your child to walk, to talk, to use his hands, to do. He will, hopefully, but on his own timeline. No amount of effort, by the therapists or by you, can make a child with disabilities do things sooner than he is ready to. And when he wows you? You should probably still refrain from kissing the therapist on the lips.

OK, parents and therapists, got something to add?

Good times with my other special kid

Max gets more attention than his little sis does. There's no denying it—he needs more one-on-one. And, yes, maybe I am guilty of sometimes cheering more loudly for him when he does something, because with Max, every little thing is a major victory.

Sabrina knows Max has special needs; I know that she wants to feel special, too. And so, I've been trying to spend more time with her alone. I'll get plenty of chances if Max ends up at sleepaway camp (as the majority of you were all for). Recently, I've taken her to a couple of Little League games, where she's known as a power hitter. Have to say, I wasn't surprised. I also recently took her to a children's museum for the debut of THQ's SpongeBob SquigglePants game, which works on the uDraw GameTablet for Wii; we got one to take home.

I figured Sabrina would consider me The Best Mom Ever, given her affection for SpongeBob. She once informed she was going to marry him, though I think she'll grow out of it and if not, the Krabby Patty would be a fine place for a wedding reception.

Her buddies were all present:

Another thing that qualifies me for a Lifetime Mom Achievement award is that she got to eat a hot dog, a hamburger, candy, and a green-tinted shake.

Then she tested out the game, which has more than 100 "Nanogames" in six worlds. I loved the interactivity and creativity; in one game, she had to draw a line between two cliffs to help Plankton get to his Krabby Patty.

Sabrina stopped thinking I was awesome when we came home and I made her take a bath. Still, it was A Great Day. And I have newfound respect for SpongeBob, her future groom.

Tuesday, May 17, 2011

Sleepaway camp for kids with special needs: Should he stay or should he go?

A couple of months ago, at a fundraiser for Max's school, I met a very cool mom who told me about a sleepaway camp for kids with special needs. (For privacy reasons, I'm not naming it now.)

First thought: I don't think Max is ready for that.

Second thought: It could be really good for him!

Third thought: I don't think he's ready.

And that's the tug of war that's been happening in my head ever since. There's an open house (open camp?!) coming up, so I'll be able scope it out. Sabrina's already jealous at the mere thought that Max would get to go to sleepaway camp. Max nods his head vigorously when I show him pictures of the place and ask if he wants to go.

I have tried so hard to encourage Max to be more independent. I know Max would enjoy the outdoors and all the activities (he loved the family camp weekend we went to last summer, although he spent a disproportionate amount of time being chauffeured on a golf cart). And this camp has a well-trained staff, a team of nurses, and everything else you'd need at a camp for kids with special needs.

Then I picture some counselor getting Max dressed in the morning (WITHOUT ME) and I picture Max eating spaghetti (WITHOUT ME) and I picture him sleeping alone in a bunk with a bunch of other kids and a counselor (WITHOUT ME), and I sort of get freaked out.


Would you do it? Could you do it?

Photo: Yes, it's from Meatballs

Monday, May 16, 2011

In the inner circle, there is no "weird"

Friday, I was filling out a form for a program I was taking Max to the next morning, sponsored by the local ARC. The kids play games, do crafts, have lunch, hang out.

Name: Max
Nickname: Spaghetti Sauce Max
Child likes: Best friend = Caleb, spaghetti, the color purple, trucks, cars, spaghetti, cars, coloring, did I mention spaghetti?
Dislikes: Anything loud
Describe what motivates your child: Discussing spaghetti and sauce and repeatedly saying "Max eats spaghetti with sauce." Also, anything purple.
How does he/she calm down? See above

As I wrote, I stepped outside of my head. And wondered whether the staffer reading the forms would think Max was...quirky. Weird, even. I find his obsessions cute and fascinating (mostly). But the act of writing them down made me ponder how someone else might view his spaghetti fixation.

I have been thinking a lot lately about how people see Max. This is not simply because I want him to fit in, so to speak. I ache for people to look beyond his disabilities and see the charming, funny, smart, complex kid I know. I want them to see Max, all of Max. Not just a child with cerebral palsy.

Then I got a grip: In the special needs community, there is no such thing as weird. For the people at the programs we go to, the teachers at Max's school, the therapists in his life: quirky is the norm. I may have a ways to go to get the world at large to see the wonderfulness of Max. But in the inner circle of special needs that we inhabit, he is who he is—and people usually adore him for it.

I finished up the forms and packed up some lunch in a container (one guess what it was). The next morning, Sabrina and I drove Max to his program. The woman running it glanced at his forms and smiled.

"Hello, Spaghetti Sauce Max," she said.


Thursday, May 12, 2011

Love That Sabrina

Wednesday, May 11, 2011

Sports for kids with special needs: a home run

Here's Max on opening day for his Little League Challenger Division, a local softball team we joined a few years ago. He's looking pretty sporty there, right? Sports for children with special needs: YEAH!

Except... the gate was as far as we got that day. Max wanted no part of the team. That's what happened last season; he just wasn't into it, and Dave stopped taking him. This year, though, I wasn't letting him off the hook.

I wasn't sporty myself growing up; my parents were all about learning and reading, and lugging a pile of books home from the library was as athletic as I got. But I want to instill a love of sports in the kids—because it's healthy, because it boosts their confidence, and because it's good, clean fun. Sabrina's taken soccer classes, and just started on a softball team. She also does gymnastics.

I think sports are especially important for Max: The more his muscles move, the better. Sports can give his ego a workout, too. Sure, Max loves playing t-ball in our backyard (perhaps you've heard me screeching "NICE HIT, MAX!!!"). I just want him to feel proud of his accomplishments on the field, around other kids and parents. I want him to have that sports high.

Back when Max was born, someone gave him a Baby's First Baseball set. It sat in Max's toy chest for years, unused, because he wasn't able to grasp the bat. The mere sight of it tortured me until finally, I gave it away. Back then, I didn't have the hope I do now. My patience lacked endurance. Then at Max's fourth birthday party, he got an I Can Play Basketball game. With a lot of focus, he was able to grasp the little orange rubber ball with both hands and get it through the net. SCORE! T-ball came along, too, over time.

In recent years, we've tried taking Max to soccer classes for kids with disabilities. No go. We're not participating in local Special Olympics programs just yet. Max has a fear of big crowds—both the noise and the mere sight of them. I want to give him another year to mature, and I'm hoping softball will be a big step toward that. His right foot is going to slow him down when it's casted in a few weeks but for now, Max can still run just fine, especially if he is trying to get away from me because it is time to stop playing outside and come in.

Sunday morning, the four of us went to a game. From the start, Max was less resistant than the first time, perhaps because I'd been talking about playing softball all week. Or maybe because I promised him chocolate ice-cream later on. OK, especially because I'd promised him ice-cream.

Max tentatively wandered into the park where the field is.

For a half hour, he stood and watched the other boys playing. There's a mix of kids on the team—kids in wheelchairs, kids with autism and Down syndrome, teens, little kids. The pitcher was really good at tailoring his toss to the child's abilities, coming up closer for kids who struggled to aim the bat. The umpire stepped in to help with batting as necessary, although most kids pushed him away because they just wanted to do it themselves. Loved that.

Each and every kid had the biggest grin on his face when he hit the ball and made it to first base, and parents cheered like crazy every time.

I'm telling you, if you ever need to feel reassured about your child's capabilities, get him to play a sport. Most can be adapted (er, not that I am recommending rock climbing or sky diving). And nothing compares to the thrills you feel as as a parent, one who wasn't sure her kid would ever walk, let alone live. You watch your kid play, you watch all of these kids play, and you get this rush of happiness. It's a sports high for you, too.

"Max, you want to hit the ball?" I asked for the umpteenth time, and finally he said "Yes!" He chose to do t-ball. "He doesn't like loud clapping or applause," I announced to everyone as he ambled up to home plate, and felt like I was a celeb publicist saying "No autographs, please."

You'll hear me cracking up in the video because at home, Max can seriously whack the ball. Here, he taps it as if were an eggshell. I think he was just toying with everyone. I didn't care; my heart was running bases at the mere sight of him at bat.

Max was very pleased with himself. And guess what? He cried when we left...because he didn't want to go home.

Do your kids do any sports, at home or on teams?

This is the second in a series of posts sponsored by P&G, for whom I'm covering The Special Olympics—they're a sponsor! "Like" their Thank You, Mom Facebook page and they'll donate $1 toward Special Olympic Team USA's journey to the World Summer Games in Athens.


Blogger has taken hostage my post on Sports For Kids With Special Needs. Please amuse yourselves in the meantime.

Tuesday, May 10, 2011

I'm not an expert, though I play one in real life

So, Max is all Botoxed up, and it's taken ten years off his face. Ha, ha. That would make him minus 2 years old. It'll be a few days before we see how much the injection loosens his right hand (particularly his thumb, which he tends to hold in as it's Krazy Glued to his pointer finger), and whether the shot to his salivary gland will have any effect on the drool. Thanks to all of you for the kind words and support. I will let you all know when I need funding to launch Mommy & Me Botox Clinics.

The iPad distracted Max before the procedure just fine. He woke up woozy and ticked off. But then we took an afternoon nap together, and afterward he was his usual cheerful, spaghetti-and-chocolate-ice-cream-eating self.

The Botox has evidently been a life-changing event for Max, because he informed me that from now on he wants to be known as Spaghetti Sauce Max, so buh-bye, Purple Spaghetti Max. (Note, he is as obsessed as ever with purple.)

All this talk of Botox and tendons and casting has my brain swirling. That's the thing about raising kids with special needs: You become a medical expert, like it or not. I spent a lot of last night Googling
"casting for cerebral palsy" and reading up on spasticity and stuff that made me wince like "tendon lengthening surgery." It also helped to read other people's experiences; Dawn's adorable little girl, Emily, just got Botox and serial casting. And she got purple casts.

If you would have told me before I had a child that I would be immersed in all this—me, the person who almost failed fifth grade science—I wouldn't have believed you. But now, doing the digging, talking with experts, and asking the hard questions are all second nature. Ditto for making sure that Team Max is strong, and that we carry out their advice as best we can. Right now, Team Max consists of:

1 school physical therapist (Max sees her twice a week)
1 school occupational therapist (twice a week)
1 home occupational therapist (twice a week)
1 school speech therapist (three times a week)
1 home speech therapist (once a week)
Another home speech therapist (once a week)
1 music therapist (once a week)
Pediatric neurologist (once a year)
Physiatrist (as needed)
1 wardrobe consultant (OK, not that)

The responsibility of running Team Max—and understanding the intricacies of cerebral palsy—weighs on me at times, especially when Max is having difficulties. I realize we are lucky he is generally healthy and not medically fragile. But then I compare myself to my friends, whose brains are not filled with medical-ese and for whom planning consists of orchestrating after-school activities and playdates (not setting up hospital appointments for Botox and serial casting). And I think, damn, I should start wearing a stethoscope or something.

Do you ever feel like a medical expert, too? Who's on your child's team?

Now, go take two chill pills and call me in the morning. Doctor's orders.

Monday, May 9, 2011

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.

Sunday, May 8, 2011

I've got a Mother's Day hangover

Mother's Day isn't even over and I'm already bummed about returning to reality.

Today, I was on the mellow side. I had stuff on my mind; Max's cerebral palsy is causing some trouble (more on that tomorrow), and I also kept thinking about my dad. My mom hadn't wanted to hang—she is anti Mother's Day hoopla, whereas I am fully in favor of having my family worship me.

Saturday afternoon, Dave sent flowers, and I have no idea how he figured out I wanted pink peonies. Last night, we hung out and watched the Lady Gaga concert, and I felt about ninety five years old.

Today, we planted more vegetables in the garden that Maxsutawney Phil will surely enjoy. Max also played softball on his team —!!! (pics coming soon).

I begged the kids to let me get just one shot of them together, I hardly have any.

As good as it gets.

Later, we had our first BBQ of the season in which we barbecued spaghetti, per Max's request. (I sneak-cooked it in the kitchen while he was outside, then wrapped it in tin foil and threw it on the barbecue.) The rest of us had steak/veggie kabobs, salmon and asparagus.

Happily, Max did not ask to barbecue chocolate ice-cream. Instead, he insisted on taking me to Cold Stone Creamery because he is good-hearted that way.

Right before bed, presents.

Flowers from Sabrina.

An Andy Warhol-esque photo collage from Max...

...and a purple-esque butterfly.

A card from Sabrina...

...along with her list of Top 10 Reasons Why I Love My Mom, which her teacher transcribed. I wonder what the woman thought of #9, where Sabrina claimed I helped her clean the house. If that didn't make the teacher alert the authorities, #8 probably did: "I love my mom when she makes me laugh by stepping on me." Sometimes, when Sabrina is lounging on the floor, I'll put my foot on her belly and tickle her. For the record, I do not actually step on her. Happily, Sabrina did not mention the part where I pretend to sit on her.

They're coming to get me. Meanwhile, I hope you were properly worshipped on Mom's Day!

Friday, May 6, 2011

20 More Reasons Moms Of Kids With Special Needs Rock

What, you thought there were only 20 Reasons Moms Of Kids With Special Needs Rock? As if! I adapted several of the below from the amazing comments on last year's post. Rock on, mamas!

* * * * *


1. Because we are geniuses at talking our way into whatever it is that will make our children's lives easier—at restaurants, amusement parks, school, wherever.
2. Because we help people see the amazing kid behind the special needs. Put that pity away, please.
3. Because we have learned the language of disability and medical conditions, so much so that sometimes people ask if we ourselves are medical professionals. Too bad we have nobody to bill.
4. Because we are so over "typical."
5. Because we work through those not-doing-enough-for-my-child guilt trips...and move right along to feeling guilty about something else. Next!
6. Because we have endless determination, dedication and energy.*
(*This motherhood brought to you by caffeine.)
7. Because we have cried more tears than we ever thought humanly possible, but never let our kids see the sadness.
8. Because we still have a healthy sense of humor. And no cellulite! Or we do have some but we have no time to care!
9. Because we know that the timeline for when our kids do stuff doesn't matter. Even when our hope is running low, they somehow surprise us.
10. Because we always put ourselves last, although we know that mani-pedis are our God-given right.
11. Because we do not let our kids' habit of banging their knees rhythmically under the table or their obsession with all things purple or whatever quirk drive us crazy...usually.
12. Because we have extreme endurance—we're talking Ironwoman endurance—when it comes to dealing with the insurance company. Press 3 if you'd like to tell off a representative!
13. Because we listen to other mothers complain about the small hardships of their lives and we don't say "You think you've got it hard, sister?!" We just think it.
14. Because we keep our composure amidst all the frolicking tots at the playground, birthday parties and playdates, no matter how painful it may be.
15. Because we also keep our composure when people stare. OK, maybe we don't. HEL-LO, DIDN'T YOUR MOTHER TELL YOU THAT IT'S RUDE TO STARE?
16. Because when our children accidentally roll over our feet with their walkers or poke us in the eye when they are flailing their arms or almost knock out one of our kidneys, we smile through our pain and we do not sue them.
17. Because we spend countless hours filling out forms and doing paperwork. Where's the app for that?
18. Because just when we think our heart can't take any more, it takes more.
19. Because we will do anything in our power to make the world a safer, saner, kinder, happier, more accepting place for our kids.
20. Because, well, you tell me.

Now, go check out Top 20 Reasons Moms Of Kids With Special Needs Rock.

For a printable copy or to request permission to republish, email LoveThatMax@gmail.com.

Thursday, May 5, 2011

Win a $75 shopping spree from Jockey: Easy Week giveaway

I am not sure how I existed before the invention of yoga pants. I live in them, even sleep in them sometimes. If I could swim in them, I would. (Note, however, I did not get married in yoga pants.)

The Relaxed Crop ones from Jockey are my faves. They're soft and comfy, but they're also made of this durable, matte fabric with flat seams that somehow makes me feel slimmer and all sporty, even if I am mostly just running...errands.

Happily, I have been squeezing in exercise lately. I've got a new work gig, and I've been walking from the train station to the office and back at night. It's a mile each way. In New York, it's a lot more pleasant to walk than to descend into Dante's Inferno (aka the subways), especially during the summer. Besides, walking is the only realistic way for me to squeeze in exercise during the weekdays.

The Jockey people sent me some gear from their staycool line—a reversible tank and t-shirt, undies. The material's made with Outlast technology originally developed for NASA; it's supposed to cool the "micro-climate" around your skin and help maintain your ideal body temp. I loved the silky feel of the shirts, and that they're reversible so you can wear them as a v-neck or crew, but mostly wanted to see if it made me feel any less sweaty during the walk (why yes, I sweat!).

Here's the Jockey staycool commercial. I don't understand why they didn't ask me to star in it, but whatever. Anyway, I speed-walked to and from the office in the staycool tank and briefs a few days in a row. And I actually did feel a little less warm than usual. So, yay, staycool.

The Jockey people are giving away two $75 shopping sprees on Jockey.com (plus free shipping) to two of you. To enter, just leave a comment about your favorite way to exercise. Or your favorite way to NOT exercise. Either one will do.

Bonus entries:

Follow Love That Max on Twitter
Like Love That Max on Facebook
Mention this giveaway (or Easy Week) in your blog and share the link
Tweet about this giveaway (one a day). A tweet: Win a $75 shopping spree from @Jockey and @LoveThatMax, ends 5/14, http://tinyurl.com/5w47ooq

The giveaway is open until Saturday, May 14 at 11:59 EST. I will randomly pick two winners, alert you both by email and announce it here. If you do not respond within 7 days, I will choose another winner. Note, you must leave your email below if it is not visible on your blog or site.

Good luck! And check out the five other Easy Week giveaways, they're all still open.

Update: The winners are Maya and Julie. Enjoy the gear, ladies, whether or not you work out in it!

What kind of thanks would you like on Mother's Day?

Like any mother, my love for my children is unconditional. I do not expect anything in return from them, although I can never get enough smiles, kisses, or the gleeful sounds they make when I walk in the door at night. I would certainly not mind if either one of them learned to cook, especially Fettucine al Salmone. Flowers (such as large bunches of pink peonies) are always lovely.

Just saying.

If Max is someday up to thanking me for my mom-ness, I would want him to appreciate this: That I have mightily tried to do whatever I possibly can to improve his life, whether it's getting him therapies, finding him new gear and equipment or going all out with stuff like a stem cell infusion. I have certainly not done everything, nor do I do everything all of the time. But I do what I can. I hope he will know that. I hope he will like this blog. And also epicurious.com.

I have thanks on the brain because of Mother's Day and a program I'm getting involved in, Procter & Gamble's Proud Sponsor of Moms. A longtime supporter of The Special Olympics (31 years—who knew?), the company is doing moms of Special Olympic athletes proud with a big chunk of change (we're talking B-I-G) that will support local programs and services. They're also a sponsor of Team USA at the Special Olympics, taking place in Athens June 25 till July 4. A couple of weeks ago, P&G asked whether I'd write about The Special Olympics, as part of a paid sponsorship, and I had to restrain myself from screeching "YES!!!!!" into the phone.

Word, for every person who fans the Thank You, Mom Facebook page or leaves a comment, P&G will donate $1 to support the USA's Special Olympics' team journey to Athens—up to $250,000 above their other contribution. Way to support special needs!

Check out this video of Special Olympics athlete Molly and her mom, Kerry (and have a tissue handy).

On Mother's Day, I suspect Max will give me something purple (SURPRISE!), and it will be awesome. I asked Sabrina what she thinks I want for Mother's Day, and she said, "Pickles." That would be fine, too. Sleeping late (my standard request): priceless.

What token of your kids' appreciation will you be happy to get on Sunday? What might you someday like your child to thank you for?

Wednesday, May 4, 2011

Win a $140 iPad/iPhone/iPod alarm clock radio/charger: Easy Week giveaway

I usually hate alarm clocks, because they make me get out of bed in the morning way before I'm ready to. But the iD85 App-enhanced Dual Alarm Clock Radio from iHome makes the task a lot easier. You can play your iPad, iPHone or iPod, charge it, and wake up or sleep to a custom playlist or the radio. There are 12 AM/FM presets.

It's cool to open your eyes to a playlist (although there is no "off" button to make the kids who've crashed in your bed stop whining because you've woken up to Springsteen instead of Radio Disney). The stereo sound is full range and excellent quality, and there's even a remote control; you can even use it to press "snooze" in the morning, although being able to lie in bed and press snooze is a dangerous thing.

The iHome people are giving away one iD85 to a reader. To enter, leave a comment about your favorite song and/or group to wake up to.

Bonus entries:

Follow Love That Max on Twitter
Like Love That Max on Facebook
Mention this giveaway (or Easy Week) in your blog and post a link
Tweet about this giveaway (one a day). A tweet: Win a $140 iPhone/iPad/iPod alarm clock radio/charger from @ihomeaudio and @LoveThatMax, ends May 12, http://tinyurl/4y8t9zl

The giveaway is open until Thursday, May 12 at 11:59 EST. I will randomly pick one winner, alert you by email and announce it here. If you do not respond within 7 days, I will choose another winner. Note, you must leave your email below if it is not visible on your blog or site.

Good luck! Tomorrow: one more Easy Week giveaway. Enter one, enter all!

Update: The winner is emmapeel. I hope this makes mornings more fun for you! It was fun reading about the music you guys love to wake up to.

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