Tuesday, May 31, 2016

That time we forgot about Max, and it was a good thing


Saturday night, we were in Cape May at the Jersey Shore and enjoying dinner out. Max had a plateful of guacamole, Sabrina downed veggie pasta, the baby feasted on puréed squash, Dave and I shared salmon plus I had a Bloody Mary with extra olives. It was pretty much one of the only times on the weekend I got to relax, since you actually have to sit when you're at a restaurant eating a meal.

After the check came, we put the baby in the stroller, made sure we took all of his stuff (baby spoon, bib, bowl, toys, burp cloth, food containers, OMG) and headed out through a courtyard. Dave lifted the stroller over a step. I don't recall what we were talking about, but we were about to walk down the block.

"Ohmmy!" I heard. I turned around and there was Max ambling toward us, with a big grin on his face. We'd completely neglected to escort him out and up the big step. Sabrina had seen him standing there—there was no rail he could hold onto for support—and before she could send out the alert a waiter had lent him a hand.

Max was nonplussed. For me, it was A Moment.

We have always kept an eagle eye on Max over the years whenever we are out in public. One of us is either cupping his elbow, throwing an arm over his shoulder or just watching him walk in front of us. Usually, that is.

What happened was an eye-opener. Independence for your child with special needs isn't just about him being able to do stuff on his own. It's also about your learning to let go, sometimes literally. Max is capable of asking for help if need be. While he's not yet at the point where we could, say, drop him off at the mall by himself, we need to find more ways to let Max flex his independence. His school IEP has a bunch of life skill goals; I guess Dave and I need to make ourselves a PEP (Parent Education Plan) for better encouraging and enabling Max to do his own thing.

Afterward, we hit the boardwalk. Sabrina and Max walked ahead of us, pushing Ben in his stroller. Dave and I lagged behind, chatting, and I tried not to pay the kids much attention.

Friday, May 27, 2016

The Special Needs Blogger Weekend Link-up: long weekend edition!


What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Great camps for kids with special needs

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 26, 2016

Great summer camps for kids with special needs


A resource list for exploring summer camps for kids with special needs. Feel free to mention any great camps in the comments that your child has been to, and enjoyed.

Very Special Camps lists camps and programs for people with special needs around the country; you can browse by disability or by state.

KidsCamps.com also lists camps by state, and specifies the types of disabilities accommodated.

My Summer Camps lists camps by disability, which you can then filter by state.

Easter Seals Disability Services has 140 accessible camps around the country—for adults, too.

Federation for Children with Special Needs lists camps for kids with special needs by disability.

Cristo Vive International provides camp programs for children with disabilities around the world; there are a few locations in this country.

Foundation For Jewish Camp has a list of camps for Jewish children with special needs. Ones I can vouch for: Yachad's summer programs and the Ramah Tikvah program, which are both inclusionary. I have also heard good things about Camp HASC in Parksville, NY, which follows IEPs.

A couple of notable camps for children and teens with special needs in the tri-state area, my neck of the woods: Southampton Fresh Air Home in Southampton, NY; Elks Camp Moore in Haskell, NJ; Camp Fatima in Harrison, NJ; and Double H Ranch in Lake Luzerne, NY. And one camp I recently found out about that looks great: Victory Junction, in Randleman, North Carolina, for kids with serious illnesses (they offer a week for campers with cerebral palsy).

Image: Flickr/Kris Krug

Wednesday, May 25, 2016

How I got my groove back: the Hard Rock Hotel at Universal Orlando


Being a parent has lots of benefits, starting with: children! Still, there are times when I miss stuff I did before they came along, like learning skills that do not involve puffy paint and exploring areas on my own. I also miss sleep.

And so, I was happy to get an invite to the Hard Rock Hotel at Universal Orlando, and experience The Amplified Package and its Sound of Your Stay music amenity program. The hotel—which recently underwent a big-bucks renovation—is both chic and fascinating. Inspired by the Eagles' Hotel California, it's made to look like the mansion of a rock star (one wealthy enough to have a place with 650 guestrooms, including 29 suites). As the inscription above the entrance reads, "You can check out any time you like, but you can never leave."






As you'd expect, the room (a standard) was pretty cool. And, yep, having it to myself was the "heaven" part of "this could be heaven or this could be hell." 


Loved the drumstick artwork on the wall, and the growth-chart mirror that shows how you measure up to various celebs' height (me: Stevie Nicks, just a tad short of Lady Gaga and Shakira).
A few other unusual items in my room: A white Fender guitar, Mustang Floor Amplifier and Blue Mo-Fi headphones. They're the "Picks" offering of the The Sound of Your Stay, available at any of the Hard Rock's 23 hotels worldwide. You call the front desk, they bring it all to your room. I don't play guitar, but I had a lot of fun jamming out. It's amazing how easy it is to feel like Bruce Springsteen when you're holding a great guitar.

"Tracks," a download program for playlists curated by Hard Rock's music pros and partnerships with global music labels, artists and brands, is also complimentary. And then there's "Mix," the latest addition to Hard Rock's music amenity program. A staffer will deliver an actual mixing system to your room, plus an iPad with a video tutorial. I've always wondered how DJ's scratch, and got to try my hand at it when I had a lesson in the lobby from Scratch DJ Academy (founded by Jam Master Jay from Run DMC). My new name: DJ Mom—ultimate proof of how cool I am, eh?


Scratching is all in your arm movement—the DJ told us to make like there's glue on the bottom of your fingers—and it's pretty intuitive. You start by pushing forward, hand at the 9 o'clock position, then move back and forth to the beat. Afterward, Hard Rock invited me to DJ an event. I'd sure like that, but I'm not sure they could afford me as my spinning skillz are in high demand.  

There's music everywhere at the hotel—piped in underwater at the pool, live music, DJ Night. A gigantic screen in the lobby has 24/7 music videos. The tunes play in the elevators, too; elevator music is no joke there. If you book The Amplified Package, available through December 31, you get a personalized VIP memorabilia tour, collectible pin and "I Got Plugged in at Hard Rock" limited edition hat.

Scattered around the hotel: music memorabilia from the Hard Rock's collection—80,000 strong, and the largest in the world. The bulk of it is housed in a vault at Hard Rock's headquarters. Items include a pair of John Lennon's glasses, one of Michael Jackson's sequined gloves, Madonna's candle votive stand from her "Like a Prayer" video, a David Bowie tour ledger complete with costs (including thousands for "incidentals" at every concert) and an Abbey Road Gold Record that Paul McCartney once dismantled to see if it would play (it wasn't even his album).

Outfits displayed on the fourth floor, where I stayed.
At the hotel, our group got the Sex, Drugs & Death tour from Jeff Nolan, the Hard Rock International Curator of Memorabilia. He told us the history of the Hard Rock chain, which can basically be traced to Pete Townshend getting slocked. As the story goes, Eric Clapton used to go to the original Hard Rock café in London in 1972. He had a spot he preferred and one day he told co-founder Isaac Tigrett that he should put up a plaque that read "Eric Clapton's seat." Isaac told him that if he gave him a guitar, he'd do it. Deal! And then, one day a drunk Pete Townshend sent over one of his guitars with the message "Mine's as good as Eric's is."

When little guests and their grownup escorts aren't gaping at memorabilia, they can enjoy activities including hula-hoop contests at the pool, "Dive-in Movies" under the stars and Camp Lil'Rock in evenings (parents get to rock a night out). The staff is exceptionally friendly. Eddie, a waiter at The Kitchen, went out of his way to get me a "real" iced coffee one morning (as in, cold—not hot!—coffee over ice and yes, I'm obsessed). 

One night we headed over to the Seminole Hard Rock Hotel & Casino in Tampa. We had a memorable dinner at Grey Salt, Marc Murphy's Mediterranean restaurant that specializes in locally sourced fresh seafood, handmade pasta and artisanal flatbreads. If you love bread, you might not want to try the grilled sourdough served at the table as you will crave it for weeks afterward (trust me on that one).

The glam Grey Salt setting, with a gazillion jars of lemons. 
Nutella profiteroles for dessert: YES PLEASE.
The Hard Rock Hotel at Universal Orlando is literally a three-minute walk to Universal Orlando (maybe five minutes with slow-poke kids). One of the best perks of the hotel stay: early admission to Universal and Islands of Adventure, plus Universal Express ride access. It cuts your wait in half, I was told, but on some rides it was even better than that. I was in the Minions 3-D simulator ride after seven minutes on line.

Diagon Alley in The Wizarding World of Harry Potter, and the Hogwarts Express to Hogsmeade Station at Islands of Adventure.

Making new friends
Unexpected attraction: A duck and eight newborn ducklings on a manhole cover—outside the Animal Actors on Location experience, of course. Staffers were standing guard nearby. 

Super-fresh sushi at Cowfish at Universal CityWalk. The restaurant dishes out burgers and sushi (aka "burgushi")—you can even have a filet roll, with avocado, kani, seared filet mignon, spicy mayo, scallions and masago. There's a variety of bento boxes for kids, including grilled cheese for non-adventurous eaters.
Wandering around Universal on my own was a thrill all its own. Next time we take the kids to a theme park, I'm carving out some alone time. Although it is terrifying to go on a roller coaster (I'm talking about you, Rip Ride Rockit) without someone you know. "Are you OK?!" the guy sitting next to me shouted as I screamed my head off.

As I left to return home, Wake Me Up Before You Go-Go was playing in the elevator. I was more than awake: I felt rejuvenated, and excited to return home so the kids could meet DJ Mom.

My trip was courtesy of the Hard Rock Hotel, but all opinions and thrills are my own.

Top photos of hotel: Hard Rock International

Tuesday, May 24, 2016

When your kid keeps taking selfies, and it's not all bad


Max went to a party the other day, and one of the activities involved taking photos with selfie sticks, printing them out and putting them in frames. He thought that was cool, but what he really wanted was a framed picture of his favorite fire truck, good old Ladder 31. So the lovely host went to her computer and made a printout of the photo I emailed her (I always have it handy).

I joked that there was no way I could have a selfie stick at our house or I'd never see my daughter again, but I was only half-joking. Sabrina regularly places one in my Amazon shopping cart, ever hopeful, and I always remove it.

Sabrina is obsessed with taking photos of herself. She does it on her iPad, and with my phone every chance that she can get. When she has hangouts with friends, they hole up in her room and take photos and make movies of themselves. I can regularly be heard yelling upstairs: "Sabrina! Where's my phone?"


She's also been roping Ben into the picture, literally. So I guess he's getting an early education in selfies.


Ben does make it hard to resist taking co-selfies. I will not, however, in the near future be downloading the My Baby Selfie app that allows tots to touch the screen and photograph themselves.


As much as I love to scroll through my photos and come upon random shots of Sabrina, I've been a little concerned about the selfie situation. Especially when a twentysomething recently introduced me to the wonders of SnapChat and I understood just how addictively self-centered those filters can make you.


I wonder about the selfie-ish children we're raising. As with most things, other than iceberg lettuce, excess isn't healthy. Although The American Academy of Pediatrics has yet to issue guidelines about selfies, it does recommend setting limits for screen time—especially if usage hinders other activities. I can see selfies becoming an issue if and when Sabrina starts posting selfies on social media and gets dependent on the approval of friends.

Sill, a Today/AOL body image survey I unearthed while googling found that 65 percent of teens say seeing selfies on social media boosts their confidence. Maybe it wouldn't be such a bad thing, then, to have a selfie stick in our home (although I'd have to hide it—like, in Utah). Maybe it would further help Max discover himself. Heck, maybe one of these days he'll start asking for a selfie stick.

Meanwhile, months ago it became apparent that Max definitely has a healthy ego. He'd been playing with my iPhone. When he handed it back, I saw that he'd changed the wallpaper. It had been a photo of Sabrina. Ever since, it's this.

Monday, May 23, 2016

On letting your child stand out in a crowd


Max declared Saturday pajama day, which was fine with me because some weekends I don't even get around to getting dressed before noon. "All day!" he told me. I said "Sure!" 

Around 3:00, Dave decided to head to Costco. Max loves going because: food samples! Same with Dave.

"Max, we need to change you out of your pajamas," Dave said.

"No!" Max said, shaking his head.

I was with him.

"Honey, he can stay in his pajamas," I said. It was chilly, so Max would be wearing a hoodie over his pj top, only the bottoms would be showing. They are unmistakably pajama bottoms. But he was content in them.

"Come on, it's embarrassing," Dave said.

"Only if you think it is," I said. "I've seen teens wearing pajama bottoms out!"

Dave grudgingly agreed.

I used to worry about Max fitting in. When he was 8 and into the color purple, I found a pair of gloriously purple Crocs at Target but decided to not buy them because I worried they would make him stand out.

At one point, Max walked around wearing the "I am spagetthi" sign from the Headbandz game during his spaghetti obsession phase. 

Over the years, though, I've relaxed about Max blending in. Especially when he started wearing the Fireman Max plastic helmet everywhere. That's how he ID'd—who was I to stop him?

To be sure, I take issue when people gape or gawk at Max, but that's when he's not dressed in anything out of the ordinary. The Fireman Max hat tends to make people smile, or strike up a conversation. Little kids have been known to ask if Max is an actual fireman. Sometimes he responds "Yes!"

Sometimes, I wish that I'd been more like Max at his age, not caring what people thought about me.

Dave and I talked about the pj thing that night.

"Max has no self-consciousness," I noted, "and we should just let him do his thing...within reason."

"I know, but he's a teen," Dave said.

"Since when have we ever expected him to act his age?" I said.

"You have a point," Dave said, four of my favorite words ever.

The next day, Max was headed to a party to hang with kids he'll be at camp with this summer. He came downstairs in the same pajama top as the day before, and a pair of shorts.


"He wanted to wear it," poor Dave explained, clearly beaten down by both of us.

"Hey, Max, that's not clean," I said. "You can't wear that."

"Awwww," he said, but he was smiling and he knew he had to change.

And he did.

Friday, May 20, 2016

The Special Needs Blogger Weekend Link-up: Posts, please


What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: When life gives you lemons, tell knock-knock jokes


Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 19, 2016

How technology has moved this boy move beyond limits plus, a cool contest


Max had something he really wanted to tell me the other day. He kept repeating himself, except I didn't understand him. As usual, he leaned in and spoke more loudly because he always assumes that it's my problem when I don't get what he's saying. Then he grabbed his iPad and typed out a sentence on his speech app:

"I want to go on a Disney cruise."

Yes, definitely an important piece of information to relay.

That's the thing about Max's speech app: For six years now it has equalized the speech playing field for him, enabling him to share his thoughts whether they involve wishful thinking, requests, fantasies, questions, observations or just being a sibling tattletale (he has been known to type "Sabrina is bad!")—you know, the usual gamut of thoughts kids have.

I've got gratitude for Max's iPad on the brain because of AT&T's new Beyond Limits campaign, the sponsor of this post. The social project celebrates the achievements of people with disabilities, and the technology that empowers them and lets them inspire others. There's a cool contest (more on that below) and featured videos about three-time Paralympic gold medalist Alana Nichols, former Rutgers University football star Eric LeGrand and extreme wheelchair Athlete Aaron "Wheelz" Fotheringham, who says one of my favorite lines ever: "You always think you can't do something...but you don't truly fail until you give up."



From the very first time Max showed me he could use a speech app (here's the video), it has been a game-changer for him. I know, like many parents, we were at first concerned that if he used augmentative communication he might be more hesitant to articulate words, but we've found just the opposite to be true. These days he is a multi-faceted communicator, using typing, speaking, nodding, gestures, foot stomping (when mad): the whole shebang.

Since mastering the iPad, Max has expanded to email and texting. Technology has helped him express himself beyond limits. And just like those athletes in the videos, it's helped pump him up—as you can see in this video.



SUBMIT YOUR OWN VIDEO, WIN A GREAT TRIP!

From now through June 27, 2016, you can submit a video about your child's story or your own and tell AT&T how you've used technology to live life "Beyond Limits." The prize: An all-inclusive trip to the U.S. Olympics Training Center in Colorado Springs, CO, for the winner and a guest. Use this link to read the guidelines and submit a video! (These are the official rules.)

For more information on AT&T's commitment to supporting people of all physical and cognitive abilities and creating accessible technology, check this out.

You can follow the campaign on social (and share your child's or your own Beyond Limits story) with #BeyondLimits.

This post was sponsored by AT&T; all opinions are my own.

Wednesday, May 18, 2016

When life gives you lemons, tell knock-knock jokes


My mood last night was of the grouchy variety. Sabrina seemed to have maybe possibly sprained a leg muscle but she wasn't sure. The baby went to sleep at around six, then proceeded to wake up four times afterward. I had work to do. Our sprinkler had been randomly going off all day long and the gardener guy never showed up to look at it. Dave was away on business so I'd be doing the late-night feeding (Ben has a bottle around midnight) and early morning shift (he wakes up at 5:30 a.m.), and I was already exhausted. #poorme

Max, he of the sky-high Emotional Intelligence, watched me prepare his evening snack: mashed banana, with a dash of powdered meds.

"Knock knock!" he said.

"Who's there?" I asked, dutifully.

"Ice-cream!"

"Ice-cream who?"

"Ice-cream fire truck!" he said, and cracked himself up.

I had to smile. 

So then I tried that classic knock-knock joke on him. I'm pretty sure I have before, but I don't think he ever got it. 

Knock knock!/Who's there?/Banana!/Banana who?

Knock knock!/Who's there?/Banana!/Banana who?

Knock knock!/Who's there?/Banana!/Banana who? 

Knock knock!/Who's there?/Orange!/Orange who?/Orange you glad I didn't say banana?!

Max cackled. And then, he repeated it back to me.

Just lack that, the grumpiness evaporated.

So then I had to tell him those other two standards:

Knock knock!/Who's there?/Olive!/Olive who?/ Olive you!

Knock knock!/Who's there?/Boo!/Boo who?/Don't cry!

And this one, shared by a kid in my Girl Scout troop:

Knock knock!/Who's there?/Interrupting cow!/Interrup..../MOOOOOOOOOOO!

I was killing him. But what I loved most was that he repeated each joke back to me, as if he was testing it out to see if he could tell it.

He could. And his timing was perfect.

I promised him we'd put them on his iPad speech app so he could tell them at school. 

There was one more I made up:

Knock knock!

Who's there?

Tired Mommy!

Tired Mommy who?

Zzzzzzzzz.

He found that one a lot funnier than I did.

Tuesday, May 17, 2016

The 12 stages of having a C-section

http://www.gettyimages.com/detail/photo/section-scar-royalty-free-image/502135134?et=eEh-PTAJS_dRLlv_Vpniig&referrer=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D401303964563152307

Stage 1: Disbelief

So who decided it's a good idea to let you lie there, awake, while they cut open your belly and poke around, even if there's a sheet draped over the area? Is this really happening? What's that weird pressure? How is it possible you are all joking about politics, as if you're sitting around in a bar, when what's going on is this: Your guts are completely exposed and they are about to fish out your B-A-B-Y?

Stage 2: Disgust

Ugh. What's that smoke?! Very funny, doc, but the resident isn't lighting up a cigarette. Actually, you do not want to know what part of your flesh they are cauterizing. Also: Some aromatherapy would be appreciated right about now. 

Stage 3: Fantasy

Wouldn't it be nice if they could do a little liposuction while they're in there? 

Stage 4: Utter and total amazement

OH MY GOD—THEY CAN SEE HIM?! He looks good? OH MY GOD HE'S CRYING! It's him!!! It's him!!!! This WHOLE ENTIRE BABY fit inside your belly! OH MY GOD!!! He actually does kind of look like those 3D photos but thankfully his nose is less blob-like! THIS IS THE BABY WHO WAS IN YOUR BELLY!!! AND NOW HE'S HEEEEEEERE!!! OH. MY. GOD!!!

Is it too late to do liposuction?

Stage 5: Pain

How can it hurt so much to move so little? Yes, you will valiantly attempt to pull up your torso by holding onto the rails of the hospital bed and then awkwardly swing your legs over to the floor while grimacing and try to take a step or two, but for the love of God please stop watching.

Stage 6: More disgust

And you thought periods were gross.

Stage 7: Tree trunks

Your ankles: They are gone. What's with all that swelling? It's so not fair that you are getting pregnancy cankles after having the baby. Oh, yes, you look extra-glam shuffling down the hospital hallway.

Stage 8: Denial

In which you hope that the nurses don't realize how many pairs of disposable mesh underwear you are hoarding.

Stage 9: Total freakout

How are you going to get up the stairs in your house/get in and out of bed/care for this munchkin on your own when your midsection is still aching? And what do they mean you are not supposed to drive for six weeks? They want you to be a prisoner of your own home with an infant? What kind of torture is that? And what do they mean "some discharge" is "normal"? Eww.

Stage 10: Not gonna look. Not gonna look. Not gonna.... EEEEEEEEEEEEEEE

It's a good thing this baby is keeping you occupied practically 24/7, and delirious the other times, because you don't have time to check how the wound looks. Also: Doing that would entail lifting the roll of flab formerly known as your belly, and you are so not going there. Well, OK, maybe you'll just take a little peek.

Bad idea.

Totally traumatized.

It's like a war zone down there.

Stage 11: Healing

Mortification: When the doctor has to lift up the roll of blubber to examine the wound, which evidently has healed. Not that you know, because you have wisely decided to ignore the area and focus on your other fab parts, like your wrists and earlobes.

Stage 12: Eternal sacrifice

"Mommy, why is there a red line on your belly?"

[In your head: "These are the sacrifices mothers make for their children!"]

To your kid: "That's where the doctor got you out of my belly, sweetie. And you were beautiful right from the start."

Monday, May 16, 2016

This video is what's great about babies and wrong with the rest of us


The baby mesmerized himself the other day.

It was his hands.

He's been noticing them for a couple of months now, and he finally realized that they are attached to his body.

I watched in awe as he stared in awe. Ben was so engaged he didn't even notice me grab my phone and film him.

Seemingly, there's not much to the video: Ben moves his hands and manipulates his fingers, staring seriously the entire time with pensive coos thrown in that loosely translate to: HOLY COW I CAN MOVE THEM! TASTY, TOO! THEY'RE MINE! ALL MINE! WHEEEEEEEEEE! OK, I'M TIRED NOW. 

But I can't stop watching this video. It is magical to see Ben discovering. It also gets me thinking about the ways I live my life, and how adults would benefit if we behaved more like babies.

Wouldn't it be amazing if we had more dedicated time for just sitting around and pondering, instead of filling all the empty moments with our iDevices.

Wouldn't it be amazing if adults were more regularly able to have this level of focus.

Wouldn't it be amazing if we took delight in simple things more often than we do.

And wouldn't it be amazing if adults took more time to see the wonder in the world.

Friday, May 13, 2016

The Special Needs Blogger Weekend Link-up: Your posts, wanted


What to do if you're new here

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: You bet he wanted to win: Max does the Special Olympics

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts. 

Thursday, May 12, 2016

He just wanted to go for a walk


The other evening, our babysitter stayed a little late so I could run to Trader Joe's and pick up produce for the baby. I am newly obsessed with making Ben food, which is not something I did for Max or Sabrina when they were tots. But I'm working from home these days, so I basically have the time and no excuse. The only problem is the kids keep wanting to eat Ben's food. Max is newly in love with apricot purée, and Sabrina thinks pea purée is delish.

Max and Sabrina were playing on the deck. Or so I thought, because when I got to the car I found Max standing by the gate, fiddling with the latch so he could get out.

"What are you doing?" I asked.

"Walk," he said, matter-of-factly.

He meant, he wanted to take a walk. Meanwhile, I realized that two of his fingers were lodged in the latch and looked to be turning white. My fingers were too big to extract his from the space so I called for Sabrina and she came to Max's rescue.

"Max, you can't go for a walk right now, there's nobody to go with you," I said, rubbing his fingers. Which was true: The sitter was with Ben, and Sabrina was about to go inside and do homework.

"Awwwww," he said.

I felt awful. Max is of the age when he should be doing his own thing. This was the first time he'd expressed a desire to go out on his own, and I wasn't letting him.

I am not typically a helicopter parent. When it comes to Max, though, I know it isn't OK for him to walk around out of our eyesight. Sometimes, he trips over his feet or uneven pavement. Or he could decide to head over to the fire station, which is a good quarter mile away and involves crossing major streets. Also: Our neighborhood is plenty safe but, the truth is, there is no such thing as a completely safe neighborhood.

We are crossing into new territory with Max. He wants more independence, and together we have to figure out what that means so that all of us are comfortable. As always, I want him to feel confident in his abilities—in this case, the ability to be on his own. Except he still needs someone to watch him.

Meanwhile, I had to get to the grocery store.

"Max, this weekend you can go for a walk, OK?" I said. Usually Dave or I are by his side when we go out. I think we'll try trailing behind him and let Max take yet more steps toward independence.


Wednesday, May 11, 2016

Got a fussy baby? Got a reflux baby? What you can learn from our ordeal


If you've got a baby with reflux or a fussy baby, you might particularly appreciate how peaceful Ben looks here. I shared the pic on my local moms Facebook group because I was so excited he was taking an actual nap. Not the kind in which he'd wake up crying after 20 minutes—the type he mostly has taken since he was born. Not the kind in which he'd immediately spit up after waking. The deep sleep, two-and-half-hour form of nap. It seemed miraculous. Then I'd worried that I'd jinxed myself by crowing about his nap, except he took an early evening nap, too, just like I'd read babies do.

Ben has been spitting up literally since the day he was born. I remember a nurse in the hospital pointing out that I needed to be careful that he didn't choke on it, and thinking Hmmm, I didn't have to deal with that with the other two kids. Little did I know what we were in for.

For months, Ben spit up profusely, earning his nickname Mr Spitup von Fussypants. He was irritable, both because of the stomach distress and the fact that he didn't nap well. Gaining weight wasn't an issue, but he really did spit up that much. People always tell you the spit-up is less than what it seems, but the stuff flowed out of him like lava—right after he ate, and then on and off again for the next few hours. At feeding time, I'd cover myself and our couch with towels and put on two bibs; mere burp cloths were no match for him. Sometimes, he projectile vomited.

Recently, though, Ben turned a corner. The spit-up is now negligible, the kind that dribbles out of babies instead of gushing. The napping, it's happening. Overnight sleeping is still crappy-ish, but as his daytime sleeping gets better I figure nighttime will as well.

Along the way, I've learned about gastric reflux and a couple other issues that also contributed to Ben's challenges. I'm sharing here in the hopes that if you've been trolling the web for answers, something here might help you.

First up: Gastric reflux is SO not "just a laundry problem"

I felt annoyed every single time I read or heard that. Having a baby who constantly and voluminously spits up isn't just a matter of more clothes to clean; it's exhausting, stressful and distressing. Who wants to see a baby puke up a lot of what he'd just nursed? I felt awful for Ben. He'd fall asleep, only to awaken a few minutes later screaming because he had to burp again.

Dealing with all of it—especially during those first few hormonal months after childbirth—put me on edge. I didn't feel like dressing Ben in cute baby outfits, since he'd inevitably spit up on them minutes later. As for cleaning, well, it wasn't just clothing. Ben would spit up on furniture, bedding and my own clothing too, yet more stuff to deal with when I was already on overload.

So if anyone tells you gastric reflux is just a laundry problem, hand him your baby so he can promptly puke on him.

Don't accept a diagnosis of gastric reflux

Our pediatrician eventually put Ben on Pepcid, to help relieve the distress (no medication can relieve the spit-up). When it didn't work, the doc said we'd all have to live with it and that Ben would eventually grow out of it. Meanwhile, I'd been reading up a lot on the issue, and crowdsourcing suggestions on my local Facebook moms group.

I did all the right things: I held Ben in an upright position while nursing, broke up feedings up so he didn't take too much in at once, burped him frequently, kept him upright for a while after feedings and had him sleep in an inclined position. I bought BioGaia ProtecTis probiotic drops to see if they would help with the stomach problems (they come with Vitamin D, so at least he could get his dose that way). I didn't see much difference. Remedies like gripe water were useless.

During a routine checkup, I mentioned to another pediatrician in the group that my other two babies had been chubby. "Is it he not chubby because of the reflux?" I asked. "Yes!" she said, entirely too cheerfully. "You're just not going to get the roly-poly baby this time!"

Something in me snapped when I heard that. I wanted a roly-poly baby. Ben is our last kid, and damned if he wasn't going to be chub-alicious.

Maybe it's an allergy

Several moms in my Facebook group noted that their babies' source of fussiness had been an allergy to their dairy intake. I was surprised the doctor hadn't mentioned that as a potential problem. Of my own accord, I took the baby to a gastroenterologist. Thanks to my Facebook crew, I knew to bring a poopie diaper she could test it for an allergy. Sure enough, Ben's diaper had a slight tinge of blood. It wasn't a major allergy, but it was there. She told me to cut out dairy.

NOT. THE. CHEESE.

But, yes, the cheese had to go. And regular milk (although I discovered that almond milk tastes even better in iced coffee, my fuel of choice). And butter.

After two weeks of giving up dairy, though, I still didn't see much change in Ben. AND I HAD TO GIVE UP CHEESE.
  
Could it be tongue tie? Nope—something even more unexpected.

I have a friend who became a lactation consultant; she came to our house, checked inside Ben's mouth and noted that he had tongue tie. That's when an unusually short or tight piece of tissue (aka the frenulum) tethers the bottom of of the tongue's tip to the floor of the mouth. Ben also had lip tie (when the upper lip is tethered to the upper gum).

Ben didn't have a weight issue, one symptom of tongue and lip tie. And I didn't have nipple pain, uneven breast drainage and low milk supply, other symptoms. Still, he most definitely had reflux and fussiness, and tongue and lip tie can prevent a baby from properly attaching to the breast and/or lead to a high intake of air—which can lead to lots of spit-up. (Here's an excellent guide to diagnosing tongue tie and lip tie.)

So off to the ENT we went. She was a cheerful, fast-talking doc who had come highly recommended and who cooed sweetly at Ben. She took a look inside his mouth and probed it with a finger. She watched me nurse him, for less than a minute. And just like that, she knew what was up: Ben had a high palate, which caused him to take in a whole lot of air when he nursed and wreaked havoc on his little stomach.

"So tongue tie isn't the issue?" I asked.

"He has it, but that's not the diagnosis," she explained. Although tongue tie can lead to speech issues, she didn't think that would be the case with Ben. Her recommendation: Quit nursing (except for "fun") and pump. Give the milk to the baby via The Medela Special Needs Feeder, a bottle with an elongated nipple and special valve that adjusts milk flow to suit a baby's sucking and helps reduce excess air intake.

I felt so relieved to have an answer...until we actually tried it.

Make sure a doctor gives you a full how-to

Normal Me knows to ask questions when doctors give advice. Sleep-Deprived Me did not think to do so. The doctor should, at the very least, have mentioned that transitioning a baby who has only been breastfed to a bottle could be challenging. But really, she should also have given some basic advice, as I discovered after we ordered the Medela bottle online, it came within two days and I tried it.

Ben wailed. He cried. He screech-cried. He would not take the bottle. After an hour, I gave up and breastfed. My nerves were frayed. Throughout the day, the pattern repeated. I Googled and discovered that it would have been best for someone who was not me to give the baby the bottle, as my scent was likely distracting and/or confusing him. Too bad, because Dave was away on business. 

The next day day, I called the doctor's office. Which leads to my next bit of wisdom:

If you see a solo practitioner, be sure she has backup.

The staffer at the doctor's office who answered the phone told me she was away. I asked who was covering for her. Nobody was. I asked if she could send an email to the doctor. As we spoke, Ben was scream-crying.

"I can't focus!" the staffer wailed, making me wish Ben could puke on her over the phone. The doctor didn't call back. Luckily, Ben finally did take the bottle from me. And that's what did the trick. Within a couple of days, Ben's puking petered off.


If you see a practitioner in private practice, ask beforehand or at the first visit who is available should the doctor not be available. You could spare yourself a lot of grief. The doctor did answer my questions by email the following week, but Ben and I had to endure an ordeal that neither of us needed.

My mom's group celebrated the New Ben with me. As one mom said, "Yay for you! Fellow mom of a difficult, reflux-y, sleep-hating kid who's now 14 months old and takes two one-hour naps and sleeps through the night. It gets better!!!!

Oh yes, it does.



Tuesday, May 10, 2016

I now know exactly what my kids like about me


For Mother's Day this year, both kids did projects that spelled out stuff they like about me. Sabrina made a mini booklet on the topic and Max put together a cute tree at school with leaves that detailed his appreciation.


This is what Max thinks I do particularly well:

• I take him out to the movies
• I cook stuffed shells with him
• I read with him
• I take him to the fire department 

Sabrina is impressed that:

• I brought her into this world
• I help her clean up her room
• I encourage her to be a better person
• I help her feel better during hard times and also "go through your long speeches when I do something wrong so I can learn."
• I take her on great vacations, like the Bahamas. (Which we have never actually been to, HINT HINT HINT.)
• When she is sick, I will do "anything" to help her feel better. 

Oddly, neither of them mentioned some of my more endearing traits including:

• Considering frozen entrées perfectly acceptable meals
• Pretending to be asleep when they come into our room too early in the morning
• Misplacing my iPhone approximately every seven minutes and yelling "Has anyone seen my phone?"
• Nonstop streaming commentary about Dave's driving on family road trips
• Embarrassing them at restaurants when I send back food 
• Sneak-attacking their ears to pick out wax
• Screeching "WE HAVE TO LEAVE THE HOUSE NOW OR WE ARE GOING TO BE LATE!"

Anyhoo, it was both fun and heartening to read their Mother's Day tributes. I mean, I try to be a good mom, yet you never know what your kids appreciate about you given that they don't mention it the other 364 days of the year. But the "I love you's"—well, those never stop.

Monday, May 9, 2016

You bet he wanted to win: Max does the Special Olympics


"Max, are you going to go fast or slow?" I asked as we drove to Max's first Special Olympics event, Track and Field. That may sound like a strange question, but Max had mentioned to me that he was scared of falling. I was curious to see where his confidence was that morning.

"Fast!" he responded.

Game on!

Max is relatively steady on his feet, although his left foot has been turning in a bit at times in the last year. I was a little worried about him, too, and so I'd bought gel knee pads that he wore beneath his sweatpants. It was rainy and dreary outside, but the mood in our minivan was sunny.

We got to the high school late where the event was being held and made a fast trek across a gigantic wet field (warmup!). Max joined the parade with a few kids from his school. There were dozens of athletes in attendance in a range of ages, including a few men who looked well into their sixties. Spectators sat in the stands, cheering them on.

The first couple of races were pretty long; a staffer explained that they put those first to give athletes competing in multiple events time to rest up. In the meantime, Max got antsy. Then he got teary and said he wanted to go home. I was all, "We just drove an hour to get here!" Then he hit my arm. Then he roared.

I knew he just needed to push past the freakout.

The answer lay a few steps away: snack stand. I wanted a soft pretzel, as I hadn't eaten breakfast. Max got a donut. Then he downed the banana I'd brought (its potassium has cramp-busting powers). And suddenly, the dark cloud over his head lifted and he was raring to go. In fact, I had to stop him from joining a couple of other races.

He was in race number eight. Finally, it arrived, and Max couldn't get to the start line fast enough. He took his place next to three other kids, and listened as he was told he needed to run in his lane. And then, they were off.

Max booked, with this huge grin on his face.  

I choked up as I cheered/screeched him on. This was the boy we were told might never walk.


He won.


I had the biggest grin on my face and tears in my eyes as we hugged.

"I WON!!!" said Max, gleefully.

Before I had Max, I never knew that the Special Olympics is a true competition. But of course, it is. Disability or not, participants want to win. And they are true athletes; I was impressed by the endurance and speed of various people. The message on the medal lanyard reads, "Let me win. But if I cannot win, let me be brave in the attempt."

The day was a win for other reasons. For years, I'd been asking Max if he wanted to participate in his school's delegation at the Special Olympics. This was the first year he'd said "Yes." And he was enjoying himself. And very proud of himself. In fact, he was not beyond gloating, as soon became clear.

After Max's group lined up to go to the podium and receive their medals, a staffer called his name.

"No!" said Max.

"Would you mind asking the announcer if she could call him Fireman Max?" I asked. "I will," she said, smiling.

Max stood in line, eagerly awaiting his turn.

"I won!" he said to one of the boys who'd been in the race with him.

And then: "You're bad!"

OMG.

I felt mortified but mercifully, since Max didn't articulate the words very clearly, the boy didn't get what he was saying.

I said, "Yes, everyone did their best!" 

Clearly, there are sportsmanship lessons to be learned; we had a long discussion about that in the car ride home.

Then they called Max's group. A police offer helped Max up to the middle podium. Max motioned me to me to come over and hold his hand—he was a little scared about standing high up. "You're OK!" I shouted to him.


The announcer called the fourth winner, the third, the second. And then: "Fireman Max wins first place!" The police officer returned to put the gold medal on Max's neck.

He waved at the crowd. I cried.


Afterward, as we walked around, people said "Congratulations!" and other athletes gave him high-fives. There was such a warmth to the event. After years of hearing about the Special Olympics, I finally got to see how absolutely amazing it is—both for the participants and the families there to watch them.

Max wasn't up for waiting till race number 40, so we left after watching several more races. Oh, but he wasn't done.

"Next week!" he said.

Thursday, May 5, 2016

I am the person who notices we are running out of toilet paper, and I rock: A Mother's Day tribute to moms everywhere



Last weekend, I noticed we were running low on toilet paper. By "low" I mean we were down to our last case but still: Toilet paper is a hot commodity. So I sent my hunter-gatherer husband out to spear some at Costco.

I am the only person in our household who ever notices that we need more t.p. The kids never give it a second thought—it magically reappears in the holder on a regular basis, placed there by The Toilet Paper Fairy. The spouse assumes that my good old trusty eyeballs will notice the dwindling rolls and raise the alert.

And this is why I rock.

Come Mother's Day, it is doubtful that any mom anywhere will receive a card that reads: "Happy Mother's Day to the woman who always notices we are running out of toilet paper." This is a good thing, because anyone who presented their partner with such a sentiment would die a quick death. But the point is, we mothers deserve props for our seeing superpowers.

This is not to disparage my beloved. Hells to the no! Although perhaps I feel ever so slightly smug that I am the person who stays on top of such stuff, this isn't about him. This is about me, and my uncanny ability to see things. Not dead people; no, stuff that comes in far more handy, and enables our family to basically exist.

• I am the person who notices we are running low on clean silverware/
bowls/plates/favorite cups.
• I am the person who notices we are running low on coffee pods.
I am the person who notices we are running low on clean underwear, unless you count the pairs with holes which some people do.  
• I am the person who notices we are running low on toothpaste/dental floss/mouthwash/anti-cavity rinse in bubble gum flavor and NOT the one with SpongeBob on the bottle/soap/shower gel/shampoo/conditioner/that detangling spray that supposedly wards off lice [insert product critical to good hygiene].
• I am the person who notices we are running low on matching socks, unless you count the pairs with holes which some people do.
• I am the person who notices we are running low on eggs, milk, bread, yogurt, butter, cream cheese, chocolate ice-cream, that pasta shaped like little wheels, Cheerios and other food basics. 
• I am the person who notices we are running low on granola bars, brownie bites, dried fruit, kale chips, cheese sticks, Pepperidge Farm Goldfish and other lifesaving snacks.
I am the person who notices we are running low on ketchup, one heavy burden to bear.
• I am the person who notices we are running low on OJ, juice boxes, chocolate syrup and the organic strawberry lemonade our son has been drinking by the gallon.
• I am the person who notices we are running low on Bac-Os, although I keep meaning to look those up to see if they might kill us.
• I am the person who notices we are running low on creamy peanut butter and chunky peanut butter and Natural with Honey peanut butter and whipped peanut butter and I so wish our family had consensus on p.b.
I am the person who notice we are running low on sprinkles, that essential food group.
• I am the person who notices we are running low on aluminum foil, plastic wrap and Ziploc bags. (As someone wise once said, "You can never be too rich or too thin or have too many Ziploc bags.")
• I am the person who notices we are running low on vitamins, aspirin, Tylenol and Midol, and while I am the only one to care about running out of Midol it would benefit other people to care about this too.
• I am the person who notices we are running low on tissues, Children's Tylenol, Benadryl, Band-Aids, Neosporin, bacitracin, Aquaphor, more Band-Aids [insert items critical to children's well-being].
• I am the person who notices we are running low on gift wrap, birthday cards and birthday candles.
• I am the person who notices we are running low on light bulbs.
• I am person who notices we are running low on dry-cleaned clothes to wear to work.
I am the person who notices we are running low on AA batteries, AAA batteries, C batteries, D batteries, 9-Volt batteries and ALL OF THE BATTERIES.
• I am the person who notices we are running low on crayons, markers, colored paper, tape, glue sticks, glitter, index cards, highlighters and, sigh, who was the last person to use the scissors?
• I am the person who notices we are running low on paper towels, sponges, laundry detergent, bleach, stain spray, dishwasher detergent, sponges, dish soap, refills for the scrubbing thingies, bathroom soap, hand sanitizer, bathroom cleaner, furniture polish, dust rags, floor cleaner, glass cleaner, all-purpose cleaner [insert products critical to household cleanliness].
• I am the person who notices we are running low on children's outerwear after most has gotten left at one activity or another.
• I am also the person who notices we are running low on children's clothing that actually fits them.
• Not to mention shoes that still fit them.
• And the hats.
I am the person who notices we are running low on storage space for all the toys and games and race cars and fire trucks and crappy plastic thingies from birthday party goody bags.  
• I am the person who notices we are running low on stamps/matches/paper clips/
various crucial little things.
• I am the person who notices we are running low on family photos and that we'd better take some before the kids are in college.
• I am the person who notices we are running low on sunscreen, bug spray and Chapstick.
• I am the person who notices we are running low on writing utensils and where do all the pens go, anyway?

I am not the person who notices we are running low on wine, gas/oil for the car, sriracha-flavored almonds, cloud storage, date nights, phone chargers and a bunch of other stuff but, back to me.

Because my seeing powers don't end with the above.

• I am the person who locates the missing stapler/keys/sunglasses/favorite t-shirt/favorite toy/book/homework folder/library card/lacrosse stick/lacrosse pinnie/lacrosse socks/lacrosse headband/TV remote/pool passes/whatever is making someone wail "Mommmmmmmy, I can't fiiiiiiiiiiiiiind it!"
• I am the person who observes, right before bedtime, that various iDevices are lying around uncharged.
• I am the person who notices that veggies in the produce drawer and fruit in the basket are rotting.
OMG how can you people not notice the fruit flies?
• I am the person who spots the squished raisins under the kitchen table, the dustballs under the dresser, the mound of lint in the dryer filter and the mystery substance on the sofa.
I am the person who finds the Redbox DVD on the floor of the car that was supposed to be returned three weeks ago.
• I am the person who discovers that the basement light is still on.
• I am the person who foresees needing gifts for the birthday party, graduation party, anniversary party, every party.
• I am the person who notices the throw in the living room hasn't been washed in approximately eleven years. But at least I finally noticed.  

All this is in addition to the vast amount of details and to-dos packed into my brain including—but not limited—to:

• My family's clothing and shoe sizes
• When library books are due
• School permission slips and forms that need signing
• Box tops that must be cut
• Payments that are due for sports teams, gymnastics, music lessons, dance class and the recital outfit (which never ever costs less than $70 and is never ever to be worn again)
• The recipe for the best chocolate-chip banana bread in the history of chocolate-chip banana bread
• When the kids' various annual doctor and dentist and specialist appointments need to be booked
• The phone numbers for the doctor and dentist and specialists
• When prescriptions need to be refilled
• Which of the kids' friends has nut/sesame allergies
• The precise location of the stone pestle and mortar set to make guacamole, the frog boo-boo cold pack, the good picnic blanket and the Tom the Turkey stuffed mascot who graces our Thanksgiving table every year
• The memorized outfits of every teacher I've ever had, including the one during my semester abroad in Florence
• The phone numbers of my two best friends in fourth grade
• All the words to Jessie's Girl

I rarely get credit for my observational talents. I see, I do and I conquer, tirelessly and without complaint. Er, mostly without complaint. OK, I complain. But has our family ever had a t.p. crisis? Nope. 

It doesn't take a village—it takes me

Because I am that person who notices we are running out of toilet paper.

And therefore, I rock.

Wednesday, May 4, 2016

Was it really the best day of his life?


The videographer who recorded Max's bar mitzvah recently asked me to choose a couple of songs for the highlights video he was making. One was easy—"Firework," a song Max loves, the one that played as he made an entrance to the party. The other was harder. Max also loves the song "Happy" by Pharrel Williams. Me, I love "New Soul" by Yael Naim and "Viva La Vida" by Coldplay.

The chosen song: "Best Day of my Life" by American Authors. It's upbeat and fitting. As I pondered it, though, I started wondering whether the bar mitzvah really was that best day of his life, and whether it would be the only such occasion we'd celebrate.

I've thought about this before. Another mom of a child with disabilities who planned her son's bar mitzvah had told me they were going all out because her son would not get married. "It's his bar mitzvah and wedding day rolled into one," she told me.

I admired her spirit, even as I had a silent freakout about Max. Would he ever get married? In general, I try not to think too hard about that because as I well know, it is not possible to predict what the future holds. As his mom, I would like to have him find happiness in love, and someday rejoice at his wedding. I've been inspired by stories about couples with disabilities I've heard over the years. I've also wondered whether Max could or would have kids; he is so sweet and loving with Ben. Every time he gets home from school, he bounds over to Ben and says, gleefully, "Hi, Baby Ben!" and I melt.

I try not to hope too much; this isn't something I can control. My marriage was one of the best days of my life, along with the birth of each of my children, but it does no parent any good to project their ideas of bliss onto their children. At heart, I know that however Max finds happiness is what's best for him, and Max is a person who regularly finds the happy. He's planning to see Zootopia this weekend with Dave, Sabrina and my sister's family at a theater that serves meals as you watch the movie, and all week long he's been telling me it's going to be the best day ever. 

Max also said it was the best bar mitzvah ever. I'm choosing to think that it's just one of many monumental occasions that will occur throughout his life, in whatever form they take. And, yeah, the boy's got some time to find true love if that's what his future holds. Although the other day, he made a point of telling me that this girl at school he adores, J, isn't just his friend—she's his girlfriend. WHAT?! 

Tuesday, May 3, 2016

The day he donated 15 fire trucks and shared the love


One thing I've struggled with in my years of raising Max is not letting him think the world revolves around him—and understanding what it means to give back. This came up recently with the fire trucks that were the table centerpieces at his bar mitzvah, which were generiously given to us by Tonka.


Months ago, as Max gleefully checked out the boxes of trucks we'd received, I suggested that we donate them to Children's Specialized Hospital, where he's gone for therapies and orthopedist visits since he was a baby. I'd checked in with their donations department, and they were game to take the lot of them.


"No!" said Max. "Mine!"

My heart sank. Obviously, Max has a major attachment to all things fire truck, but he sure did not need 18 additional ones and more importantly, didn't he want to make kids happy?

"Max, you already have a lot of fire trucks," I pointed out. "There are children at the hospital who would love to play with the fire trucks. Let's give the trucks to them after your bar mitzvah!"

"No!" said Max.

Max is by nature a pretty caring and loving person, but as someone who is often the center of attention because of his needs, he's mostly been the "as you would have them do unto you" part of the "Do unto others" command. Now that Max has matured in so many ways, though, he needs to to focus more on helping others. Max's disabilities don't exempt him from the basic human requirement of being willing, ready and able to lend a hand. Even when it comes to toy fire trucks.

As the months passed, I kept talking with Max about giving the trucks to the children at the hospital. Finally, Max agreed. The day after his bar mitzvah, he wanted to know when we would be going to the hospital to deliver the giant box sitting by our back door filled with trucks and plastic firefighter hats.

We drove over one day during Max's spring break, and the donations coordinator met us at the entrance. Max introduced himself ("Hi, I'm Fireman Max!"). He opened the box to show her the wonders that lay inside. He peered curiously into the closet where donations are kept. I showed him the big therapy room where he used to get PT and OT when he was a tot, and he asked if the kids would be playing with the trucks in there. I said probably.

He left, seeming pretty content.

"Max, you should feel good because kids at the hospital are going to have so much fun playing with the trucks!" I told him.

He said "Yeah!" And then he wanted to know if he could visit the trucks, a reasonable enough request.


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