Tuesday, August 31, 2010

My kind of people: An amazing weekend with special needs families

We don't often hang out with other families who have kids with disabilities. Occasionally, yes, like at a birthday party for kids in Max's class or when we arrange a playdate with one of them. Otherwise, on weekends we're with friends (only a couple of whom have kids with disabilities) or family or running around like maniacs doing errands or activities. It's not that Dave and I don't like being around other families like ours, it's just that we've never gone out of the way to forge the friendships.

I forget how heartening, comforting and life-changing it is to be around people who have kids with special needs—people who totally get it. Last weekend, I got the most amazing reminder.

First we visited Stockbridge, Massachusetts, a beautiful, quintessential New England town.

Max and Sabrina chose to tour the village by PlasmaCar. (I know, wouldn't it be great if they made them for adults?) Then we went to dinner at The Dakota in Pittsfield, a place my parents took me to as a teen. Max did not want to be there, and he made that known. As in, he screeched when we were seated. An elderly guy and his wife sitting at a nearby table glared at Max. "I don't want that kid near us!" I overheard him say to the waiter. I turned on my heels. "He has special needs," I said, caught in that weird place between I am ticked off/I am really upset you just said that. "Oh," the guy responded. Max eventually calmed down, but I was unnerved.

The following morning, Max screeched in the quaint dining room at our quaint hotel, The Red Lion Inn, because he wanted room service (I blame the Disney Cruise!) and again, people glared. Then we went to The Norman Rockwell Museum. As charming as the paintings were, it occurred to me that the artist had only painted typical families and typical kids doing their typical-life things. No kids with special needs in those paintings, no kid with sensory overload screeching his head off in the middle of a quaint restaurant, nuh-uh.

And then, we were off to three days at Camp Pontiac sponsored by The Starlight Children's Foundation. The brothers who own the camp, Rick and Ken, have generously hosted dozens of families for the past three years. This was our first time there and wow, did it feel like home.

The camp was exceptionally good-looking, inside and out. Somehow, we ended up with an entire bunk to ourselves.

Not too shabby, eh?

The staffers and volunteers were beyond nice and accommodating. Once they realized that Max was obsessed with rides on golf carts—I mean, the kid would have happily slept in one if we'd let him—they gave him ride after ride after ride.

When he'd been on a cart for too long and other kids wanted a turn, I'd drag Max off and he would immediately trot over to another cart and smile at the driver, charmer that he is.

On Saturday afternoon he rode around in a cart for a good two hours.

We all enjoyed the Saturday evening barbecue on a golf cart. I am really glad Max didn't insist on bringing one home, because it wouldn't have fit in the minivan and it would have been grand larceny, to boot. Also, it wouldn't have fit in his room.

Happily, we did manage to pull Max off the golf cart for other activities. He painted a window pendant (in "ur-ul"—purple—of course)...

...and then he painted a few more.

Sabrina made one, too.

Max took a motorcycle ride...

...and played Skee-Ball with Sabrina.

He tried his hand at hockey, which I only discovered when Keith, his golf cart chauffeur of choice, found me and said, "Max got off at the hockey rink." It was a wondrous sight.

He lined up to shoot hoops with the big boys.

And did I mention he liked the golf carts?

Max opted out of the bonfire, swimming and movie night, though he was all for the ice-cream party afterward.

Not Max! Sabrina was also too chicken to zip-line. That makes three of us, four if you count Dave. Maybe next year; perhaps I could get them to hook a golf cart up there? Max also chose not to be in the big group photo. He screeched and wailed and let me tell you, nobody glared.

There were so many cute kids everywhere, kids who wanted to chat or ask questions about Max or, once, just sit quietly beside me and hold my arm. "Where is your sister?" asked one little boy, referring to Sabrina and thrilling me (could it be my new moisturizer?). I loved seeing siblings helping each other out. There was one teen with cerebral palsy whose brother was by his side for most of the weekend. It gave me a hopeful glimpse into Max and Sabrina's future, assuming those two don't kill each other.

Thanks to Max's busy golf-cart schedule, Dave and I had time to relax on benches outside of the canteen and hang with other parents. Within minutes of meeting, we were sharing stories about what happened to our kids. We had a long, cathartic discussion with another couple about doctors who had predicted the worst about our children. Dave had a nice talk with one father, who had sole custody of his six-year-old daughter, about encouraging our kids to talk. People also shared their experiences with other good-deed groups. If you have an ailing child who needs a plane ride to medical appointments, check out Angel Ride, a free service run by volunteer pilots. And if you know of a child with cancer or another life-threatening illness, tell their parents about Camp Sunshine.

Two days later, I'm still on a high from that weekend. Eternal thanks to Rick, Ken, the Camp Pontiac staff and volunteers, The Starlight Foundation, all of the great families we met and whoever invented golf carts. The sunshine felt good on my face, the kids' glee made me happy, the toasted marshmallows were yummy but just being around all those parents and families gave me comfort and contentment I don't often feel.

Monday, August 30, 2010

An incredibly inspiring video on disabilities, and other good stuff

A big thumbs up from me and the monkey to this incredibly inspiring and moving video, along with these sweepstakes and giveaways (none of which involve a monkey, this photo just made me smile).

• This summer marks the 20th anniversary of the passage of the Americans with Disabilities Act (ADA), a landmark piece of legislation that protected people with disabilities from discrimination and promoted their full inclusion in education, employment, transportation, public accommodation and elsewhere. Check out this video, "20 Years of the ADA," created by The Center for Independence of the Disabled, NY. Make sure you're not anywhere near your sleeping kids when you watch it, because afterward, you will want to stand up and shout "YEAH!!!!!!!" Thanks for telling me about this, Laura, and for all of your support.

Care.com and Gilt Groupe are offering a chance to win services up to $15,000. The grand prize winner will receive an "extra pair of hands" to help with whatever's needed—child care, house care, pet care! Five second-place winners will each get a $500 gift card to shop Gilt Children. Fifty third-place winners will snag a one-year Premium Membership to care.com. The sweepstakes ends on September 15, you can enter by going to Gilt Children's Facebook page and clicking on "Enter To Win" on the top tab.

• Mike, dad to the adorable Marissa, is giving away a really nice paci blanket from Palookie. Check it out! He's a good guy who blogs to raise awareness about infantile spasms.

• Staples $75 gift card giveaway happening right here, for anyone who needs school supplies and/or has a severe Post-it addiction.

• And now, the last shameless self promotion you will hear from me in a while: Tomorrow is the final day to vote for the Parents Connect Best Parenting Blog award this blog is up for. If you like Love That Max, feel free to vote. You'll be entered to win $1000, and I'll remember all of you when I am president someday. Or something like that.

Photo/Clint Koehler

Kids With Special Needs Around The World: Greece

I started reading The Iron Chicken (tagline: "Life in the weird lane") a year or so ago. I love Emma's voice and spirit. She lives in Athens, and I thought she'd be a great person to feature for the second post in the Kids With Special Needs Around The World series.

So here I am, an English woman in Greece, with a Greek husband and a wonderful son who happens to have Angelman Syndrome (description: "A neuro-genetic disorder that occurs in 1 in 15,000 live births. It is often misdiagnosed as cerebral palsy or autism. Characteristics of AS include developmental delay, lack of speech, seizures, and walking and balance disorders.
"). Dimitri is 10, post-toddler, pre-teen; I’m 43, post-denial/grief, mid-extremely-irked-with-lack-of- services-and-general-discrimination.

Early Intervention is (supposedly) provided within the School Units for Special Education, from age 4 to age 7; other children may be integrated into regular classes, depending on their needs. There are few statistics on the number of children or adults with disabilities in Greece. It has been estimated that of 200,000 children with special needs in this country, only 20,000 attended public or private school. There are not nearly enough services for all these children; those with severe, profound and multiple needs are those most often left out. This includes children with autism; I believe 12 autism-specific “centers” were planned some years ago but the program was not completed. There are only two schools for children with visual impairment.

I have met many families whose children have never seen the inside of a public educational establishment, in particular children with severe, profound or multiple disabilities, my son included. School services and special ed are always delayed to start every year due to lack of teachers, school buses. For those who are integrated into mainstream school with a “parallel aide,” they may be waiting until December for the aide to arrive. No separate curriculum for children who are unable to follow the regular curriculum, no IEPs, frequently no Braille books in schools.

The government seems to have overlooked the necessity to provide accessible schools, with teachers and assistant, a curriculum, teaching equipment, and I just don’t like the arbitrary 1:5 teacher to student ratio in “special ed units." A class must have at least five children, a classroom of six to ten children has two teachers—nothing based on the needs of the children, just the numbers.... So anyway, my son attends a private “school” a long way away, for four hours a day plus four hours of travel. We are lucky we can afford to do this; others get by on a few hours of therapy a week and remain at home the rest of the time.

Obviously, lack of government and societal support sucks, but wouldn’t you just know it, life just keeps going on. So, on we go!

I’ve always believed that Dimitri should be included, involved and generally treated as much as practically possible as a “regular kid." To me he is a regular kid. It’s normal for Dimitri to be different. It turns out though, successful inclusion in life also requires myself to have good social skills, oh crap, darn it. I have to say I’ve pretty much failed when it comes to “playdates” and I hadn’t heard of the phrase “networking skills” until I became a parent.

It seems networking skills aren’t my forte (in person, at least—the Internet is so much easier). However, I’m pretty good at tootling about the neighbourhood with Dimitri. While not everyone is nice or understanding, there is an abundance of people in our neighbourhood who know Dimitri by name (although they don’t know mine) and take the time to talk to him. Some have known him since he was a cute, chubby baby, others more recently as a tall-for-his-age, sometimes sweet, sometimes not so sweet (he is 10 after all—possibly obnoxious-boy age?).

The way I see it, the more we go out, the more familiar we are to others, the more accepting they are (likely) to be. The word normal (such an annoying word) just seems to represent what we are personally familiar with. I hope, if people are familiar with Dimitri, they will accept him in the community, see him as any other kid (and later adult) and maybe, actually care about what will happen to him (and others) when we are no longer able to care for him. Seriously, you don’t want to know about supported living in Greece, it’s just too depressing.

All I really know at this point is, the woman at the supermarket checkout still talks to Dimitri even after he attempted to chuck that carton of milk at her....

In the face of being unable to change a whole country to become more accepting, less discriminating and to live up to home and international laws on human rights, I’ve decided that one thing I can do is make sure that there are people who know that we are here.

Sunday, August 29, 2010

Every kid deserves a back-to-school backpack...even if they're in school year round

"Mommy, can I get a new backpack?" That's Sabrina talking. She's really excited about going into kindergarten, and perhaps even more psyched about all the stuff she might be able to get.

"Yes, we'll go to Target and see what they have," I say. Then I pause. I’m thinking about Max. He hasn't asked for a new backpack because he can’t talk. He's also not starting school in September, given that he goes to one that runs year-round. But, still, he deserves a new backpack, just like all the other kids. He deserves that fresh start.

Back-to-school season is both an exciting and strange time of year for me. Memories of meeting new teachers, seeing friends again and shopping for school supplies come flooding back, giving me a charge. I feel renewed, even though as an adult nothing is really changing for me (well, other than life getting even more hectic). This year I'm feeling wistful, too;
Sabrina's entry into public school is making me acutely aware of the contrast between the kids. One child is doing things the way I did it, one child is markedly not. One child is "typical," as the world defines it; one child is not.

And yet, I am determined to even the playing field. I make sure both of my children savor the pleasures of childhood, whether that means spoon-feeding Max chocolate ice-cream or climbing up the jungle gym with him. I read to them at night separately, since they have different levels of comprehension. I kiss them both so often it’s ridiculous, even while they sleep.

But what to do about Max and his lack of demand for a backpack, something that seems like some quintessential child right? I could program the speech app on his iPad to say: “I want a new backpack.” Or, better yet, I can visit a couple of sites and let him point to what he wants. And that’s what I do.

I settle down on the couch with both kids and the computer and we browse backpacks. Sabrina wants a blue one, Max wants something “ur-ul” (“purple.”) He would also like something involving car washes (“ar wahhh!”), his other current obsession, but nothing quite fits that bill.

Sabrina finds her dream backpack. Max falls for a purple lunch pack. I order them. The kids seem happy. I’m happy. Both my kids are now ready for a new year at school…and so am I.

Originally posted on VolunteerSpot as part of the Views On Back To School Series. The site has sign-up sheets that make it easier to get involved at school. Register there before October 1, 2010 with the promotion code "Teachers Save" for a chance to win $100 in free classroom supplies for the teacher of your choice from ClassWish.

Thursday, August 26, 2010

Back To School Giveaway: Win a $75 Staples gift card

You've heard about my CVS addiction and my Target shopping therapy; well, I have a Staples habit, too. I genuinely enjoy checking out notebooks; browsing markers, crayons and special pens; taking in the glorious Post-it colors; and fondling folders and otherwise fantasizing about the many ways I can organize myself...someday.

I'd never noticed that Staples had a fair amount of eco-friendly products, too, until a recent event at a store. There's everything from notebooks made of sustainable materials to scissors made with recycled plastic., along with a Staples EcoEasy site that lists products with a green bent.

I have really clear memories of shopping for back-to-school stuff as a kid, and of teachers giving ridiculously detailed instructions about supplies (single-topic, spiral-bound notebook that has a pocket in front). I can also vividly picture standing with my parents and sister on the street, waiting for the school bus to show up on my first day of first grade. I was wearing my favorite red dress...which I proceeded to wear every single day that week.

How about you—what are your most vivid back-to-school memories? Share them below, and you'll be entered to win one of two $75 Staples gift cards.

For bonus entries...

Like Staples on Facebook.
Like Love That Max on Facebook
Tweet about this giveaway with a link back; you must also be following @LoveThatMax. Here's a tweet: Win a $75 Staples gift card from @LoveThatMax, ends 9/4, http://tinyurl.com/249uqxf
Subscribe to the Love That Max feed; you can do that here or another way, and leave a comment saying how you subscribed
Follow Staples on Twitter
Follow this blog on Blogger.
Post about this giveaway on Facebook with a link back or blog about it.

This Staples giveaway is open until Saturday September 4, 11:59 p.m., and is for U.S. and Canadian residents. I'll randomly choose two winners, announce them here, and send out e-mail alerts. Good luck!

Note: I received some Staples products at the event, but the opinions and shopping addictions noted here are my own.

UPDATE: The winners of the two $75 gift cards are B. Wilson and Leslie. Congrats! And thanks to everyone for entering and sharing your memories, loved reading them.

Wednesday, August 25, 2010

Q&A: How do you know when your child needs a speech device?

In the last couple of months I've been exchanging e-mails with Heidi, from AJ's Awesome Adventure. She had a speech question for me, and she said it would be OK if I shared my answer because it's a question I hear a lot:

I wanted to ask about Max's speech. When did you know it was not coming along at a "normal" pace? How did you deal? Did you try sign language, or was that the more difficult choice due to his limited arm/hand use? Why are you OK with auxillary communication systems? Help me to understand how they help, not hinder or make things easier. While I realize AJ is a different ball of wax due to his hearing loss, and learning to listen through his cochlear implants, I am curious.

When Max was little, this is a question I wondered a lot, too. I thought that getting him a speech device meant that he'd be codependent on it—and that he'd never develop speech. I also had to break through the mental barrier of accepting that I had a child who needed a communication device. I'd always known Max was at risk for having issues with speech, but I hadn't been prepared for the grief I'd experience of not having a kid who could say "Mama."

The stroke damaged Max's frontal and temporal lobes, the parts of the brain that control speech and language. As a baby, Max never babbled (although he did an admirable job of being exceptionally cute and smiley). He also had trouble retaining food in his mouth when he ate, a sign that he was having issues with tongue coordination (common with kids who have cerebral palsy). By the time he was three, he wasn't yet saying words. It was clear he was going to need some other way of communicating besides speech. For us, American Sign Language wasn't an option, because of Max's dexterity issues. He has some signs, but in the end, a communication device was the best possibility for him.

The more I researched it, and the more I spoke with doctors and speech therapists, the more I realized that a speech device would only encourage speech, not the opposite. The more means of communication Max had, the more he'd be eager to communicate in any which way he could. I wanted to be able to really understand his wants and needs, so I could nourish his intellectual growth, instead of constantly guessing or assuming what he wanted. I wanted him to be able to interact with other people, especially kids. Also, I didn't want him to get frustrated. He needed a way to express the thoughts locked up in his head, ones he couldn't quite get out of his mouth.

We started off using PECS (Picture Exchange Communication System) pictures. They look like this:

When Max entered preschool at three at a school for kids with special needs, the speech therapist printed out a whole bunch of PECS pictures in different categories (food, toys, bedtime, etc.) and created a binder full of them. We also mixed in actual photos. She laminated them, and attached Velcro to the back. When we wanted Max to choose things—say, at breakfast—we'd pluck pictures out of the binder (illustrations of oatmeal, pancakes, chocolate milk) and place them on a Velcro stand we made. It was his introduction to augmentative communication.

By the time Max was four, I thought he was ready to try a communication device. He loved computer stuff, and I figured it was worth a shot. The head of the speech therapy department said she didn't think he was ready, and a battle began. I knew she was wrong—what harm could come of trying one? It later emerged that no kid in the school had such a device. This department head didn't even know that our state had a lending library of devices through United Cerebral Palsy. We got Max an evaluation from a speech center at a hospital (necessary to get the school board to pay for it), who deemed him ready to try a device. By then, I'd decided to shift schools because I'd seen how non-progressive his was.

Max was on the Dynavox by age 5. Right before that we'd trialed the Tango, mainly because in a strange coincidence, a friend knew the genius guy who created it. It was so much lighter and cooler-looking than the Dynavox, and I loved that it used real kids' voices (unlike the more robotic-sounding ones on the Dynavox), but Max wasn't quite ready for it back then. He had a little trouble manipulating it, due to his dexterity issues.

We jumped on the iPad and the Proloquo2Go app. They've been amazing; I'll post an updated video of Max using them in the near future. Dave and I love this combo because they're super-easy to program and Max can carry the iPad around (the iPad is 1.6 pounds, vs. the Dynavox's 4 pounds, 11 ounces). Max loves 'em because they're easy to use and just plain cool.

Oh, and Max's speech? It is coming along. He's saying more words all the time and stringing ones together to form sentences, and even though they're not that clear he's trying. A couple of months ago, for the first time ever, I heard him lying in bed at night, babbling.

So, Heidi, here's what I say: Do more research online. Talk to the experts in AJ's life and see what they recommend. Find out if there's an association for the hearing impaired in your area that might have an expert to recommend. AJ might be fine with sign language alone, but it's good to educate yourself on all possibilities. We are our kids' best champions. And while we're no experts, sometimes we do know best.

If you've dealt with this topic, please jump in. Any experts out there who'd like to share?

Tuesday, August 24, 2010

Today is a good day to celebrate my child

When you have a little kid with special needs
time passes by agonizingly slowly.
You are always waiting...
wondering when your child will do things.
You can't even imagine
that day when your child
will be walking or saying words
because you are mired in the delays
and the expert appointments
and your own distress.
When, you want to know.
You go through life
not quite believing this is your life,
trying so hard to be a cheerleader
and to cherish this child who needs
you so much
even as you cry in the shower
or in the car
or wherever.
As your child grows older,
moving at his pace, not yours or anyone else's,
you grow more patient
and less anxious.
Your child makes progress.
Real progress.
The sadness is less sharp.
And if things don't happen,
you are not crushed
because you know now that
someday they could.
There is no timeline.
Or maybe they never will
but you have a healthy amount of
acceptance in your heart,
and it keeps you strong.
And most of all, you have
an incredible child, and you know it.
But then one day you realize
that maybe you haven't been celebrating
as much as you should. You see a photo
and realize just how grown up
your child is getting, that the years
are flying by and wow, he sure
has come a long, long way.

This is that photo.

Monday, August 23, 2010

This is how I stay organized. Go on, laugh.

Yes, people, I still have a paper planner. Wait, it gets worse: I actually bought a new Filofax a few months ago, and I got the most amazing deal because these days it's like buying a rotary phone or something. I know of just a couple of other women who have them, who I won't out here. Surprisingly, there is no "I have a leather-bound diary!" Facebook support group.

I love this organizer, with its burnished leather and chunky feel and the way it isn't easily toss-able into a toilet (these are the subtleties you appreciate when you have kids). I've kept all the pages from the last 10 years, a record of my transition from carefree single woman to hypercrazed mom who jots down deep thoughts like "Buy rainbow sprinkles and glue stick." I have a BlackBerry. It's got a good phone, some fun apps and a calendar I ignore. Every December, when I order refill pages for my planner, I fear I'll find out they've stopped making them...or that the person on the other end of the line will laugh at me. ("SERIOUSLY? YOU WANT PAPER?!!!")

I realize this isn't the most eco-correct way to exist, but I'm hooked. My Filofax essentially functions as my brain: I note everything I need to do—work stuff, medical appointments, people to call, house tasks, bills to pay—and events like kids' birthday parties and the occasional night out with friends. In the back, I have a page with a list of all the specialists in Max's life. It's a looong list. This thing can get a little ridiculous looking because I shove in assorted paperwork and random stuff (like the hotel key). Friends tease me, but when we make plans I can flip to days faster than they can click. Also, my Filofax never runs out of batteries.

So, call me a dinosaur, but I am a damn well-organized dinosaur. Now that I've gone public about my paper planner, it's your turn to share: How do you (or don't you?!) stay organized?

Sunday, August 22, 2010

A brother and sister like any other

This weekend, Sabrina and I were talking about a birthday party Max went to a month ago for a kid in his class; she is still sulking over the fact that she didn't get to go. Suddenly she said, "That boy is special, like Max."

Her understanding about Max is kicking in. She is getting that he isn't quite like other kids. We're trying to help her understand how he does fit in.

Sabrina: "Is Max older than me?"

Dave: "Yes."

Sabrina: "But Max doesn't talk!"

Dave: "Yes, he can talk! He just talks in his own way."

She's asking lots of questions. Her jealousy's also flaring up; she realizes Max gets more attention, and she wants to make sure she's getting her fair share. For one, she's still wearing his clothes.

Me: "Sabrina, why don't you want to wear dresses?"

Sabrina: "Because I want to look like Max."

She teases him. Sometimes, it's the sort of teasing siblings do ("MAAAA-AAAAX! I'M GOING TO A CAR WASH AND YOU'RE NOT!"). Sometimes, she imitates him. Like we're driving along and suddenly from the back seat we'll hear:


And then Sabrina will say, "Guess who said that? Me or Max?"

Max cracks up. We try not to laugh, too (I mean, it is funny even though it's really not), and when we're able to speak calmly one of us will say, "Sabrina, please speak in your usual tone of voice, that's not nice."

Other times, Sabrina is supersweet to her big brother. She made the dolls below at camp; she asked for an extra one for Max. When we're walking around, she'll point out Sienna minivans (Max gets so excited). Tonight, I left the two of them sitting on my bed watching TV and went off to fold laundry. When I came back, Sabrina was sitting behind Max, hugging him.

So, basically, they treat each other like any other siblings. What's been hard lately is feeling like Max is missing out on stuff Sabrina's getting. A few weeks ago, I went to check out a summer camp that Sabrina might go to next year. It was the most adorable place, with every camp-y thing you could think of—an arts and crafts hut, tennis, a big lake. I happened to go on a day when there was a party, and all the kids were gathered in a big tent, dancing around. As I stood there watching I thought, I would love for Sabrina to come to this camp. And I ached for Max. He goes to school year round, which means camp isn't a possibility. I so wanted him to be one of those kids, dancing.

Sabrina took tennis lessons this summer. She's going to gymnastics in the fall. Max, no lessons yet. Last year I brought him to a karate school in our area that offers classes for kids with disabilities, but he refused to stay. I suspect it was because the outfits were white, not purple.

I'll try again this year. Max is plenty happy with his life, but I want to expose him to activities to enrich his mind...just like we do for Sabrina.

Saturday, August 21, 2010

A day at Imagination Playground

A few months ago, I read a magazine article about Imagination Playground, a breakthrough play area at South Street Seaport in New York City that encourages unstructured play. David Rockwell designed it, a big-shot architect who's tackled everything from hotels to the set design for the Broadway show Hairspray.

The piece mentioned movable foam parts kids could use to build stuff, sand, water structures, a tower to climb. It sounded fantastic, and much more exciting than the usual slide-swings-jungle-gym playgrounds. Then Beth from Role Mommy and Kim from Mom In The City invited a bunch of local bloggers to a family event at Imagination Playground. Is it weird that I was even more excited about it than Sabrina was? I felt bad, Max had school, but we'll definitely come again.

First, we had lunch at the lovely and fascinating South Street Seaport Museum, catered by 'Wichcraft and Stew Leonard's. Double yum. Sabrina was especially pleased that I let her have a cupcake before her sandwich (because, er, I did that too).

Then we hit the playground and like all the other kids, Sabrina jumped right in. I did wonder how they're going to keep the blocks clean; am I turning into my mother? Not that there's anything wrong with that, Mom.

Overall, I was wowed; ditto for Sabrina, aka Ms. Picky. Imagination Playground is a really creative take on the standard playground. I also liked that there were park rangers there to supervise. A tiki bar with frosty drinks would have been nice, too. He, he. Sabrina's review: "It is fun to go to! I played in the water! I got sand in my sneakers! They need purple blocks for Max!" Be sure to bring good sunscreen and hats for the kids (there are a bunch of umbrellas but the play areas are out in the open). Imagination Playground is accessible to kids with disabilities—the playground is mostly level, and there's a ramp you can ride a wheelchair around that gives you a nice view of the entire space. I know Max would have a blast in the water play area.

If you're visiting New York and plan on exploring South Street Seaport, Imagination Playground is a great place to take the kids.

Imagination Playground location: Burling Slip, John Street between Front and South Streets
Hours: Open daily 9am-7pm

How are the playgrounds near your home? The ones by us are pretty good, but in my dreams, there would be one that's just for kids with disabilities.

Update: Beth shared a video she put together, check it out!

Thursday, August 19, 2010

A letter to Max: I do not mourn who you are

Dear Max,

After I put up the post yesterday on being sad about us not getting a happy ending, it occurred to me that someday, you may read it and think that I consider you a tragedy. (I know for sure you will think I am the world's lamest cook, but that is a whole other story.)

I wrote to you last year right around this time, too. It was the night before you got the stem cell infusion at Duke University, and I wanted you to know that I do not regret your disabilities. I didn't want you to ever get the impression we were doing that procedure because we thought you were lacking in any way. Once again, I don't want you to feel that I in any way mourn who you are.

Because I am your mother, I mourn that you had a stroke. I will always mourn that. At times, I get bummed that you have more challenges to overcome than other kids. At times, I get sad that you were not miraculously healed.

But I do not mourn YOU, Max. I can't imagine any other Max. Like last year, you are a boy who is full of enthusiasm and sweetness and brightness and all sorts of wonderfulness, not to mention Good Hair. This year, you've become a boy with a really great sense of humor. You've developed lots of, shall we call them, passions—purple! Car washes! Toyota Siennas! More purple! You're spelling your name out loud and doing an admirable job of writing it. You're saying lots of new words, and wow, is your "NOOOOOO!" clear. You are trying hard to speak in sentences. You are getting very wise; when you want to sleep in our bed at night and I say "You can't, it's broken!" you laugh at me and say "NOOOOOO!" (Apologies for trying to put one over on you, but you kick in your sleep.) You're doing an awesome job of feeding yourself. You're walking up and down stairs by yourself. You pedal your green tractor down the hill like a speed demon, with a wicked little grin on your face the entire time. You've learned how to isolate your pointer finger and use it to point to things and peck out stuff on your iPad, quite the amazing feat. You are getting really brave about exploring new places, even pancake houses. You have a best friend at school, Caleb, your first ever best friend. You have all sorts of new interests like miniature golf, computer games, finger-painting and the show Max and Ruby, and you think it is hysterical when I call it Max and Poopy, which is good for my ego because it's really hard to get a laugh out of Sabrina. You plant the yummiest kisses on my cheek and when you nestle your head into my shoulder and make those sweet sounds, I am the happiest girl in the world.

I love you as you are, Max. I always will.

Those times that make you wonder: Why didn't we get the happy ending?

A few months ago, an editor I know at Parents told me they were running a story about a mom whose kid had a stroke at birth, the same thing that happened to Max. She asked if I'd be OK if they mentioned this blog, and I think my response was something like "Hell yeah!"

It was hard reading the first part of the article, because it brought back painful memories of the trauma surrounding Max's birth—seizures, doctors telling the couple their baby had brain damage and was at risk for cerebral palsy, getting involved with Early Intervention, the mother fearful of what the future might hold for her child.

Then I got to this part: "By the time he was 2, Luc had 'graduated' from therapy, and his neurologist could no longer find physical evidence of impairment from his stroke. From picking up a Cheerio with his fingers to speaking a full sentence and reading simple words, he has met every developmental milestone on time. We believe that having Luc in therapy at such an early age made a big difference."

My heart sank, as awful as that may sound. It did. Not because I wasn't happy for this beautiful little boy—I was. Not because I didn't think it was an important article for raising awareness about pediatric stroke—I did. But still, that "Why not my child?" feeling swept through me. We got Max so, so, so much therapy back then. We still do. We've done everything we humanly can for him. And yet, he cannot pick up a Cheerio. He cannot speak in full sentences.

I know, logically, why not Max. He had more brain damage from the stroke, a bilateral one, than that little boy did. It's sort of like how lightening strikes—there's no control over where it goes or how much damage it does.

I know we are very lucky the stroke was not worse and that Max is doing as well as he is. "It didn't get to the basal ganglia," a neurologist at the hospital told us as he showed us the MRI film of Max's brain. The white parts were the damaged areas—the temporal, parietal and occipital lobes, part of the frontal lobe too. But the basal ganglia—the group of nuclei that lie deep within the brain and are critical to motor control and learning—were spared. In a nutshell: Max would have been far more disabled if the stroke had hit that area. It was the one good piece of news I had to cling to after Max was born. For months, it gave me tremendous satisfaction to tell doctors we met, "The basal ganglia were not affected."

I know there are parents reading this whose kids might not be doing as well as Max is, and they may be thinking I have nothing to complain about. I am acutely aware of that, even as I struggle with my own habit of comparing Max to kids who have exceeded his abilities.

I know that Max is still young and bright, and that he will continue to make great progress.

I know, I know, I know. But it doesn't stop those thoughts from cropping up.

When Max was born, our pediatrician knew of two other moms in our area whose babies had strokes. He connected us, and they came to a baby party we threw for Max. "He'll be OK," one of those moms told me. I desperately wanted to believe her. A few months ago, I bumped into that mom and her daughter in the Target parking lot. Her kid, now about 11, is just like any other kid. There is nothing really wrong with her, her mom told me. Again, that double-edged thought: Good for them, sad for us.

I feel absolutely, positively crappy when I have these thoughts—it seems awful to, well, envy another child's well-being. To covet that well-being. Are these not deadly sins? I don't feel any sense of gratitude when I see Max doing better than another kid who's had a stroke or who has cerebral palsy, I just feel sorry for that kid. But when Max isn't doing as well as another child-stroke victim, that gets to me.

I've tried so hard to quit comparing Max to typical kids. It's taken years, but I no longer do it. Still, I compare him to other kids with the same diagnosis, and it dredges up pain. And gut-wrenching guilt. I hope, as the years pass, I'll stop doing this too.

Do you ever compare your child to other kids with the same diagnosis?

Wednesday, August 18, 2010

Mom Goodies Giveaway: Win a $50 treat from ProFlowers (you choose!)

I like getting flowers delivered to my house as much as the next girl, though lately I'm just as happy to get fruit in the mail. Perhaps this is a sure sign I'm getting old but go on, feast your eyes on this Organic Extravaganza box the ProFlowers peeps sent with grapefruits, oranges, pears, kiwis, apples and avocados. Everything was exceptionally yummy. Max, a world-renowned avocado connoisseur, couldn't get enough. My husband, sadly, was not at all suspicious of who exactly had sent me the luscious fruit. "Mmmmm," were his exact words.

Here's a special delivery for you: ProFlowers will send two readers any item from the site that's under $50 (and they'll take care of shipping, too). Fruit, gourmet treats, plants, flowers—pick your pleasure. Just browse ProFlowers and leave a comment below mentioning which under-$50 item you'd like.

For extra entries:

Follow ProFlowers on Twitter
Like ProFlowers on Facebook
Follow Love That Max on Twitter
Like Love That Max on Facebook
Subscribe to the Love That Max feed; you can do that here or another way, and leave a comment saying how you subscribed
Tweet about this giveaway. Here's one: Win anything you'd like under $50 from @ProFlowers and @LoveThatMax, expires 8/25, http://tinyurl.com/2dlruer

This giveaway is open until 8/25 9:00 p.m. EST, and is for U.S. residents only. I'll randomly choose two winners, announce them here that day, and alert you by e-mail. Please be sure to leave your e-mail if it is not visible on your blog or site.

Update: The winners are Victoria 99, who had her eye on the Sago Palm Bonsai, and kngmckellar, who was lusting after the Ultimate Godiva Indulgence Gift. Enjoy your treats!

Tuesday, August 17, 2010

Monday, August 16, 2010

Life before I really had stuff to worry about

These are "worry dolls." Guatemalan legend has it that if a child tells one worry to these itty-bitty dolls, then slips them under her pillow at night, the dolls take away the worry and the kid wakes up worry-free. My mom sent me some in college. I think she got them from a museum gift shop though of course, now Amazon sells them. I've long ago since lost my dolls but my sister, who somehow manages to hold onto everything in life, kept hers. I was at her place this weekend, spotted them and wanted to give them a whirl. So I "borrowed" them.

Last night, I slept with them under my pillow. Only Sabrina came into our bed at midnight, complaining that her belly was aching, then kicked me on and off through the night. There was no real period of deep sleep for those dolls to have swiped my worries, though it would have been nice if they'd absorbed some of the impact to my thighs.

Every once in a while, I'll see something from my pre-kid life and get kinda sorta melancholy. It could be anything, like a pair of skinny jeans that used to fit me (those, I've managed to keep because I think they will somehow inspire me to lose the baby weight). Or my wedding photos. Or my old college textbooks and notebooks, with scribbled notes to friends like "Are U going to the party tonight?" Or virtually the entire city of Hoboken, NJ, where I lived for most of my singlehood.

But man, the worry dolls, they got to me. What were my worries before I had kids? They seem so trivial now though back then, of course, everything was a Big Deal. Work deadlines. Guys who dissed me, dip-heads who liked me. Little tiffs with friends. Not having any great plans for a weekend (GASP). A too-short haircut (oh, OK, that's still trauma-inducing).

I went out for drinks with my friend Brooke tonight and I mentioned the worry dolls and how laughable my worries from my pre-kids days seem. "Back then, you weren't as equipped to deal so everything seemed like a bigger deal," she said. "I had silly worries back then because I was silly!"

Wise words: A lot of things did loom larger back then because I wasn't mature enough to deal. Then I had to grow up really, really fast. In one day. In an NICU. Today, I'm much better equipped to handle concerns. But, still, the worries are of the supersize kind. They're mostly all about Max.

I wish I could go back for just one day to my twentysomething life, knowing what I do now, and relish how carefree things were.

Is there something in your life that makes you a little melancholy about those pre-kid days?

Sunday, August 15, 2010

Sometimes we are THAT special needs family

The scene: Sunday morning. We are en route to The Original Pancake House. We've tried to come here before, only the din has wigged Max out and we've had to give up and leave. But we are fools for pancakes, and so try again, we must.

I call the place. I tell them we have a kid with special needs, and ask if I can put our name on the waiting list now. "Sorry, no," the lady says, nicely. "We can't do that. But we can make sure you get seated really quickly once you're here." We decide to go for it.

As soon as we arrive, I jump out of the car and check in. There is a horde of pancake-hungry people waiting for tables. The hostess tells me she'll get us the next one that's free, and I say we'll wait in the car and could she call us when she's ready? She agrees.

"Oh, one more thing," I say. "He likes corner tables, if there is any way that is possible, that would be great!"

Never the shy type, I have become the world's pushiest person since having Max.

She says she'll try, without even a hint of WTF in her voice. It takes a lot of patience to be a parent of a kid with special needs, but I suspect it might take even more patience to be a hostess at a pancake place.

We hit the parking lot and entertain Max by finding Toyota Siennas (his favorite car) and letting him pat them. That's his thing: he runs around them and pats them down. Only this time, he sets off the alarm on one, and we grab the kids and slink away. Max has also turned me into an adult delinquent.

Five minutes later, we get the call from the hostess and walk in. Max wails. He screeches. The crowd gathered in the entryway stares. Literally, everyone stares. I pick him up and he flails his arms and legs, managing to whack me in the eye. I carry him to the lovely table in the lovely quiet corner. Sabrina sits down. Max makes a break for the door.

"I'll handle him, you order," Dave says, and he and Max head outside to feel up more Siennas, no doubt.

I order pancakes for the kids. "Can you please serve my son's in a skillet?" I ask. The waiter stares at me like I've just asked if they serve pancakes here. "My son likes to eat out of skillets at breakfast," I explain. It's true. If that's what it takes to get him to eat his eggs or oatmeal, we do it.

"I'll have to ask," the waiter says, and scurries off. The hostess who seated us returns, no doubt not surprised it is me again. "Sorry, the skillets are only for cooking food," she says. I realize that next time, I should BYO. I'm not sure a skillet will fit in my purse but when I get home I try and it does. So going forward, we will be THAT family who brings their own skillet to the restaurant.

Dave returns a few minutes later with a calm Max. "How did you do that?" I ask, once again amazed by Dave's ability to placate Max. "First we touched all the Siennas," Dave says. "Then I talked about his friend Caleb, and how much he loves him, just to get his mind off the restaurant." Smart man I married, eh?

And that was pretty much that. We had to keep asking the waiter repeatedly for napkins, since Max is a messy eater. Then Max needed his chocolate milk in a paper, not glass, cup. Then I needed a fresh cup of iced coffee because Sabrina decided to drop a crayon in there. But otherwise, we had ourselves a very pleasant pancake breakfast: Max, plain; Sabrina, chocolate chip; me, potato; Dave, wheat. And wow, were they good.

Have you ever been THAT family?!

Thursday, August 12, 2010

Mom Goodies Giveaway: $800 worth of freebies for you!

It's true: You get some pretty nice freebies at BlogHer (although, oddly, nobody was giving away the thing I want most in life: a good night's sleep). But without you guys, I wouldn't have much of a blog; while I adore my mother, it is nice to have other people reading this thing. So here you go, wonderful readers. I'm giving away...

A limited-edition Lia Sophia chain-link, crystal and lacquer bracelet from the Red Carpet collection, worth $450. It is really gorgeous; my five-year-old has her eye on it, but I think she should stick with the Hello Kitty jewelry for now.

A pair of Skechers Shape-Ups XF, worth $100. These shoes are designed to work your muscles harder when you exercise, so you burn more calories and get more toning-up. I own a pair and although the only time I ever run in them is when I am desperately trying to catch a train home from work, just walking in them gives you an exercise boost and you don't even feel it until you take them off and then your muscles are all damn, I DID get a workout.

A blue-and-white striped cotton Land's End scarf. No idea what it's worth, but who cares? It's cool.

A Kodak EasyShare M580, 14 megapixel camera worth $199. It takes a great photo; you can then tag yours and zap them to Facebook, Flickr, YouTube and Kodak Gallery by pressing a button. Hence, the "easy" in "EasyShare."

A plug-in Scentsy candle warmer, with a scented bar in Autumn Sunset, worth about $18. Peace and quiet not included.

Mr. March! He, he.

Please leave a comment below saying which items you'd like to be entered to win (feel free to say all of 'em). I'll pick the winners by Saturday, August 21 at 11:59 p.m., announce them here and alert you by e-mail. For extra entries...
• Follow this blog on Blogger.
• Subscribe to the Love That Max feed; you can do that here or another way, and leave a comment saying how you subscribed.
• Tweet about this giveaway. Here's one: Major #giveaway: $100 Skecher Shape-Up sneakers, a $450 Lia Sophia bracelet & more, ends 8/21, http://tinyurl.com/2ejja9h
Be sure to leave your e-mail if it is not visible on your blog or site, as my ESP is in the shop being repaired and they wouldn't give me a loaner.

Update: The winners are Kim Anderson (Lia Sophia bracelet), Jammie (Skechers Shape-Ups XF), Elizabeth P (Land's End scarf), MeghatronsMom (Kodak EasyShare M580), and Kimberly (Scentsy candle warmer). Congrats, ladies, and enjoy!

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