Let’s Celebrate Earth Day Every Day!

Earth Day happens on April 22nd, but we should really be pampering Mama Earth year round. I’ve got some fantastic tips and ideas for celebrating Earth Day every day. For instance, stop using plastic!!! Check out the full article at Real Simple.

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11 Secrets To Traveling With A Toddler (Without Losing Your Mind)

Let me be honest, I don’t look like one of those moms who has her act together at the airport. You know who I mean: That woman strutting through B terminal with a fresh blow-out, pulling a roller suitcase that works, while two well-behaved children walk swiftly behind her, each carrying his or her own Trunki without complaint. Yeah, I’m the frizzy-haired one in sneakers, yelling at my kids to hustle, like a farmer might herd cattle.

Here’s the thing, though. I may look like a train wreck, but I really do know my sh*t. Since having kids, we’ve traveled everywhere from Barbados to Great Britain, South Africa to Albuquerque. We’ve been on planes, ferries, cars, busses. That’s why I have a pretty good handle on how to travel with toddlers—without losing my mind. Have a look at some of these tried-and-tested tips, and see what’s worth incorporating into your next adventure.

Travel early, and remember the sleep schedule. You have probably experienced “the witching hour” with your toddler (if you haven’t, I’m jealous!). There are certain times of day when our kids turn into absolute nightmares—usually when they’re ready for a nap or bedtime. If you’re flying, get an early flight, and leave plenty of time to get to the airport. You’ll experience less traffic, fewer lines, and your kids will be “fresher” and hopefully won’t have any over-tired Exorcist-level meltdowns. Alternately, start your road trip when the kids are halfway to dreamland and let them sleep in the car.
Prepare for motion sickness. Whether or not your kids get carsick regularly, it’s best to be prepared for the possibility. Maybe you’ll be taking a few windy roads to get to your destination, or a choppy boat ride on the beach. My kids puke at the drop of a hat, so I always carry OTC motion sickness meds, no matter what.
Wrap new toys. I’m a big believer in wowing my kids with something new and shiny. Not only do they love the opportunity to unwrap a present, but then they’ve got something they’ve never seen before, which makes it all the more fun to play with. Doesn’t have to be anything crazy, simple stickers or a new book can be wrapped and are a great way to pass the time.
Pack snacks. Hi, have you met your kids? They like to eat. As a mom, I have learned to travel with a wide variety of snacks, in various compartments of the bag. Some healthy (for earlier in the trip) and a few junkier treats (for when you’re struggling through hour 11 of a 15-hour flight, and your kids are starting to become psychotic). Decant boxed snacks into plastic baggies, or get a large pill container to create a variety of portioned snacks—I like to think of this one as the Advent calendar snacking method.
Bring extra clothes. If it’s an overnight flight, car ride, or boat trip, pack a pair of PJs in your carry-on. Always bring extra undies (or pull-ups) for the recently potty-trained crowd. And, I hate to say it, but be prepared for the upchuck factor. If someone voms—on themselves, or most likely on you—you’ll want to avoid smelling like pizza puke for a seven-hour flight (#beenthere).
Load up on plastic bags. We’ve all got plastic grocery bags around the house, right? Use them to organize clothes in your suitcase, and then they can double as trash bags, diaper bags, or somewhere to stash wet bathing suits.
Skip the hotel and rent an apartment. Unless you’re planning on staying at an all-inclusive resort with all the bells and whistles, renting a house will save you money while also providing a more relaxed space, and allowing you to prepare food for your picky eater rather than suffering through fancy restaurant meals they won’t eat.
Don’t forget the apps. Whether you’re on a plane, at the beach, or visiting a museum in Rome, you’ll be glad you have an arsenal of trusty apps and games to keep your kids entertained. Apps can fend off meltdowns and keep the kids entertained while the grownups attempt to soak up a bit of the local culture.
Pack a first aid kit. There’s nothing worse than arriving at your destination and realizing your little one has a fever. Always pack a thermometer and children’s pain relievers, as well as the rest of the first aid staples in case of cuts and scrapes.
Don’t over-gear. If you’ve got all the baby gear, from carriers to strollers and travel cots, think about your destination before lugging it all to the airport. Going to the beach? A stroller might be too cumbersome for the sand. Planning on bringing a travel cot? Double check with your hotel or rental to see if they might be able to provide one. Believe me, you won’t be lacking for things to lug through the airport.
Prep for a good night’s sleep. Consider bringing blackout shades if it will be light at bedtime where you’re going. Also, you might try getting your toddler on a new sleep routine a few days before you head to a different time zone. That way, you’ll get more out of your vacation time.

**Originally posted on Momtastic.com**

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My Kids Are Totally Destroying My Spotify Cred

I used to pride myself on listening to the newest, hippest indie and electronic music. I’ll never forget the year my best friend and I went to SXSW, cramming a hundred bands into four fabulous days. It was amazing to be on the pulse, to see Bon Iver and the guys from Mumford & Sons before they became famous. Music has always been my lifeline. I get that itchy feeling if I’m in a quiet room with no music playing. I always know the right song for each mood, and I love it when date night includes a small music venue with a talented new DJ or one of my favorite rock bands. For years I’ve curated my musical tastes to be exactly how I like them, to represent every part of my personality.

… And then I had children. At first, my Spotify app became dappled with lullabies and Mozart for Babies. As my daughter grew older, I threw in a little Laurie Berkner and Anna Banana Band. From an early age, we’d indulge in some pop music, too. I’d play her the classics I’d grown up with—a little Mariah, some Ace of Base or TLC—but then it was always back to listening to music on my terms. Stuff like Bowie or Gold Panda.

I was still in control—of my Spotify, my stereo, my ears. It wasn’t until my daughter went to kindergarten that things really started to change. I’ll never forget the day. Trixie came home from school with a friend, the two of them singing and dancing. And then it happened. When I was least expecting it, they asked me to play “Timber,” by Ke$ha and Pitbull. It was like that scene from Psycho when Anthony Perkins pulls the shower curtain on Janet Leigh and starts stabbing her, except, instead of a knife, I was being slowly bludgeoned by my daughter’s crappy taste in music.

I mean … Timber. Where do I even begin? Is it the line, “She says she won’t, but I think she will,” or maybe the one about Miley Cyrus twerking in her bra and thong? There are so many gems, it’s hard to keep track. Honestly, I don’t think my daughter has a freaking clue about Pitbull’s gagworthy intentions in this song, but it’s pretty damn nasty. You may be wondering: Why don’t you listen to the Kidz Bop version? Y’know, the version where they replace Pitbull’s lecherous twang with a bunch of wholesome pre-teens repeating the only non-offensive part of the song (the chorus) over and over again. I mean, who wouldn’t want to subject themselves to opt for that?

Yeah, no.

But, we have. Oh yes, we have listened to Kidz Bop. I have succumbed to those sassy, untalented, soul-and-sound-sucking demons. Maybe I’m a bad mom (don’t answer that), but I also have musical standards, and even if Pitbull and Ke$ha promote an unsavory message, Kidz Bop might actually be the devil.

Eventually, I had to put my foot down and give Kidz Bop the ax. Mostly, I have trained my daughter to overlook the bad words so that we can listen to the original songs. They’re still pop songs, still fluff. But it’s worth it, even if I do catch her saying, “You PMS like a bitch,” (thanks, Katy Perry), or “I got passion in my pants and I ain’t afraid to show it,” (h/t LMFAO). It’s still better than hearing my daughter mimic ridiculous lyrics like, “Here’s my cup, put some water in it.” Liquor, it’s supposed to be liquor! Amirite, Bruno?

Kidz Bop is mostly out of our lives now, but that doesn’t change the fact that I still listen to more cheesy pop music than I’d ever anticipated, past the tenth grade. It’s like, somehow I created this world where my Spotify Daily Mixes consist of Taylor Swift and Shawn Mendez. Who the hell is Shawn Mendez anyway, and why does he need stitches? Because his girlfriend won’t kiss him? Move on, dude!

The fact that I even know who these people even are is a bad sign. I’m losing my grip, my cred. Instead of being up-to-date on bands and new sub-genres, now I know when Selena Gomez has a new single out. I know the damn music from Disney’s Descendants, for f*ck’s sake! In one way, I feel like a failure as a human being. But, in another, I feel like I’m bonding with my kids in one of the best ways ever. We sing together; we perform; we emote. Less and less am I in the front row at small concerts, not-dancing with the other hipsters, but now I’m learning some pretty sick Beyoncé move in my living room, thanks to “Just Dance.”

The reality (my reality), is that I can’t be a music geek forever. I’m too old for that sh*t. I’ll always be into music, and I’ll still seek out indie playlists and peruse local concert listings, but it feels kind of relaxing to not work as hard at it. Like I’m passing on the gauntlet. It’s time for my kids to be in charge. Even if that means listening to Kidz Bop—JK! Anything but that.

[Originally posted on Momtastic.com]

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I Want To Be An Activist, But My Kids Are Holding Me Back

Ever since the presidential election last fall I’ve been outraged, depressed, terrified, and wanting to get more involved. I regret that I didn’t volunteer to call undecided voters or put up posters in 2016, but would it have made a difference if I had? I don’t know. What I do know is that the world sucks and I constantly feel that I should be doing more to help make it better.

Right now, I’m wearing my Moms Demand Action sweatshirt. Sometimes my husband jokes about it, that it gives us an excuse to make out, but (and you probably already know this), underneath the line Moms Demand Action, it says For Gun Sense In America. I bought the sweatshirt when it was advertised in an email from Everytown For Gun Safety. I’ve also got the Nasty Woman t-shirt benefiting Planned Parenthood, She Persisted stickers from NARAL Pro-Choice America, and a tote bag from Earthjustice, among other merch. My email and Facebook accounts are drowning in updates from congress reps and news organizations and liberal non-profits.

You got a petition? I’ll sign it. And I’ll forward it to my friends.

But sometimes that’s all I can do. Why? Because #MomLife. Maybe it’s a crappy excuse, but while this country is maybe/maybe not going to war with North Korea and some stodgy old men in DC are trying to take away my fundamental womanly rights, I’m fishing a Lego-sized booger out of my son’s nose. I’m checking reading logs and math homework, sewing holes in tights, folding laundry, potty training, cooking, crafting, combing for head lice — the list goes on. It’s hard AF being a mom and a human, and when you add concerned citizen to the mix, it gets even harder.

Every time I get an alert or an invitation to a rally or a march, it coincides with taking my son to the dermatologist or my daughter to the ENT. The vigil I would so passionately like to attend? It starts right at bedtime, and my husband’s working late and I can’t find a sitter. Depending on the issue, maybe I don’t think it would be safe to schlep my kids to a protest, and the one thing I don’t ever want to do is put my kids in danger.

Even if the protest happens to be on a weekend, my kids don’t want to spend their Saturday doing that boring-a*s crap. They want to go to the park or ride bikes. They don’t want to stand completely still, two to three feet shorter than everyone else in a crowd of hundreds of people, listening to local members of congress scream through tinny megaphones about stuff they’re too young to understand. Not that I don’t try, sometimes. We’ll show up at rallies and I’ll have a backpack full of snacks — every crunchy treat I can find in the house, plus emergency chocolate. I make sure my phone is fully charged so they can quietly play games or watch videos while we’re standing there. We’ll cheer, we’ll applaud. After a while, when the wriggling and whining begin to distract the people around us, we’ll decide to pack it in.

I try to make it real for them, explaining what we’re there to support or oppose, but it isn’t easy or even remotely comfortable to define white supremacy or sexual harassment to young kids. It sucks.

And that’s where I’m at, stuck in a cycle of guilt and bursts of involvement followed by distractions and avoidance. I do my best. For me, that means donating money whenever I can, however small the amount. It means wearing my Mom’s Demand Action sweatshirt and signing every petition that comes my way. It means having my senators and congress people’s phone numbers in my phone and calling them when I can. Maybe on speaker phone while I’m folding laundry, or when I’m walking to the school bus stop. It always makes me a little self conscious, folding Paw Patrol undies while thanking Senator Gillibrand for doing everything in her power to reject Trump’s tax reform plan and asking her to keep fighting for the rights of immigrants and women, but she can’t see the undies or the blush on my cheeks, and hopefully the calls occasionally mean something.

Maybe I’ll never be the activist I really want to be (although I know some moms who are doing it all, and to them I say THANK YOU!), but I’ll keep trying. Because even if my kids are holding me back, sometimes they’re the only thing keeping me going.

**Originally posted on Momtastic.com**

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I Can’t Deal With The Swearing Rules That Kids Have

I could see it in her eyes right away. When I picked my 6-year-old daughter up from school, she looked upset. The drama had happened that morning, on the bus ride to school, and it took nearly half the walk home for me to pry it out of her. Apparently, she had used a bad word on the bus when talking to her friends, and a third grade boy had made it into a big deal, chanting “Ooooh, she said a bad word!” Even retelling the story, I could see the way my daughter squirmed, how humiliated this experience had made her feel. If there’s one thing I know about my daughter, it is that she is insanely sensitive and hates being told off (I mean, who doesn’t?!)

“What did you say?” I asked. “What was the bad word?”

Naturally, I prepared myself for an F-bomb, but she got very quiet and said, “Hell.”

Now, it’s no secret that I enjoy swearing, and I have no problem with allowing bad words to be spoken in our home. The rule is, we don’t swear outside of the house, and don’t use bad words around friends, relatives, or teachers. …But … hell? That was the bad word some a*shole third grader had lorded over my weepy first grader?

“Huh, so ‘hell’ is that bad?” I mused as we strolled down the block. Maybe it’s because I’m an athiest or the fact that I swear enough to have become immune to such a bland, commonplace word, but I honestly couldn’t believe it. So I probed further. “But … how did you say it? Like, give me the context.”

She shook her head, too ashamed to elaborate. I gave some examples. “Did you say, ‘How the hell are ya?!’ to one of your friends like an old-timey newspaper reporter? Or was it more like, ‘It’s hot as hell today!’ or something actually negative like, ‘Go to hell.’?’”

Again, she wouldn’t answer, but I know my daughter and, like most 6-year-olds, she would never tell someone to go to hell. It’s mean, which I get. What I don’t get is the actual bad words themselves. I mean, I can’t keep up with it! Swear words for kids include stuff like “shut up” and “jerk” — words I try to use in order to stop myself from saying actual bad words. Jerk sounds pretty PG, if you ask me. And it wasn’t until I was trying to cram one more towel in the “stupid” washing machine that I learned that was on the no-no list, too. Yes, “stupid” is a bad word. Even when you’re talking about a f*cking towel.

I understand that kids need to have limits, and raising them to be respectful, well-mannered, clean-mouthed young people is important and may lead to a better future. But I also think it’s way too easy to create a mountain out of a mole hill and make banal words seem like weapons. Especially when some suck-ass, lame word like “hell” makes my daughter the subject of a third grader’s ridicule, driving her to tears on the school bus. In fact, she was so upset about being heckled that she was still in tears when she got to school, too embarrassed to admit to her teachers what a horrible crime she had committed (even though they later reassured her that she was not in trouble).

Seeing how seriously my daughter took it, though, all I wanted was to make her feel better. It took a lot for her to admit what she’d done, and I was proud of her for that — not to mention pissed at the kid who’d totally blown it out of proportion. I did my best to explain to her that she’d done nothing wrong, and reminded her that there is a time and place for cursing. I told her the third grade boy was probably being a bit of a show off and that she should forget about it, but I could tell the humiliation was still eating away at her. So I took a different approach. A much more “me” approach.

“You know what?” I said with a shrug.

“What?”

“…Fuck ’em.”

Finally, she smiled.

[Originally posted on Momtastic.com]

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How I’m Talking To My Daughter About Kissing (Earlier Than I Thought I’d Have To)

My 5-year-old daughter is married. It was a pretty rushed engagement — school was only about a week or two in when I heard the news. Needless to say, I was surprised. Five, and married – who is the boy?! My husband and I started to joke that they’d move out and find their own apartment, wondering when they’d hit Tiffany for wedding bands. Obviously a kindergarten union is a harmless affair, but I couldn’t help thinking: What happens in a kindergarten marriage? I’ve seen them hug like frantic monkeys beside the bus stop. They chase each other up and down the block every morning. I even heard that my new son-in-law kissed my daughter’s hand once; this info came from a third party and my daughter denied it, because kissing is not allowed. That is not my rule, BTW. It is a School Rule. Not that it’s a bad rule but, to be honest, I’ve been so consumed with keeping my picky kids fed and bathed and stimulated and alive (etc, etc, etc), that somehow I forgot to prepare myself for kissing.

But it’s a thing. They’re 5-years-old, but it’s happening. Recently, I was catching up with an old friend who practically turned pink when she confided to our small group of moms that her precocious, sunny daughter had been caught kissing at school — a few too many times (with a few too many boys). When she said it, I laughed. I thought I was supposed to. I mean, they’re 5! But it turned out that several moms had concern about the kissing epidemic. It’s totally possible that I’m a slacker and completely biased because my daughter has always been so shy. It’s only now — in kindergarten — that she finally seems to be opening up and happily hugging her friends. For as long as I can remember we’ve encouraged our kids to hug at the end of a playdate. As toddlers, if they gave one another a peck on the cheek we’d ooh and aah and whip out our cameras. So why is it suddenly taboo?

Maybe the answer — much to my horror — is that our little kids are starting to grow up. My husband stopped letting our daughter hop into the bath with him the day she wouldn’t quit asking about his penis. I mean, it’s normal. Being curious is normal. But maybe as parents it is our job to interfere a bit more.

So, how am I supposed to talk to my daughter about kissing? Here are a few ideas, though I’m always open to more.

1. Keep it in the family. Several friends have mentioned the idea of reminding your child whom kisses are for. Kisses are a way to express love, and should be saved for family members only. Mollie Grow, MD, a pediatrician with Seattle Children’s Hospital, agrees. “If there were a party line it would be: Only with family and only when you choose/feel comfortable with a kiss.”

2. Make kissing in school prohibited. Chances are, your child’s school already has a “no kissing” policy. Just let your kids know you support this rule, even if it means they take it to heart and refuse to give mommy kisses at drop off!

3. Take the scientific approach. “Louis Pasteur established a germ theory by the late 19th century…” As my BFF suggested, going into a lengthy scientific explanation is sure to bore the idea of kissing right out of them. In all seriousness though, no kissing means less germs and therefor less colds — something to consider!

4. Discuss cultural traditions. For a more nuanced discussion, Dr. Grow suggests talking with your kids about different cultures around kissing, “like for greeting people,” she says. We all know about the French double-cheek peck; can your come up with any other cultural references?

5. Explain why we set limitations. Not everybody wants to be touched all the time. Look at who you’re kissing: Do they look like they want to be kissed? It’s important to be able to tell. As a good friend told me: Although kissing is something people do to show love, we only show love with actions when we have permission.

6. Open up the conversation. Dr. Grow suggests asking your child what they think. “Ask them: What are other ways to show affection to people we care about?”

7. Wait for the phase to pass. As my sister-in-law pointed out, her kids (ages 9, 12, and 15) find kissing hugely embarrassing. It’s true, I remember getting totally icked-out when my parents kissed in front of me as a kid, and when I saw people kissing on TV. For big kids, kissing is often disgusting.

8. Prepare for the phase to return. Chances are, my 15-year-old nephew won’t find kissing yucky forever, and that’s what my sister-in-law — and moms across the globe — will have to face next. God help us all!

[Originally posted on Momtastic.com]

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How I Talk to My Daughter About Privacy (Plus, Expert Tips)

The other day, my 6-year-old daughter and I had the usual morning argument about getting dressed, and I ended up losing the war on leggings. Whatever, I decided. It wasn’t worth my sanity. We got to the playground and instantly she began climbing and hanging upside down on the monkey bars and flashing her princess undies to the entire world. At school, the girls are required to wear shorts/leggings under their skirts presumably, in part, for this very reason, and I told her in a stern voice not to flip upside down (a futile request, of course). It wasn’t until a random mother came up and whispered, “Your daughter should be wearing something under that skirt. There are a lot of pervs around here, and you don’t want them to get a good look,” that I suddenly felt weird. As a rule, I despise nosy parents who give their two-cents on the playground—who is she to tell me how to raise my own kid? But then I started to second-guess myself. I mean, did she know for a fact that the 20-something guys loitering on the wobble-bridge were pedos? Was she saving my daughter from being molested? We stayed at the playground for another 10 minutes or so—pervs be damned—but on the walk back to the subway, I couldn’t help feeling morally obligated to talk to my daughter about it.

“Do you know why I always ask you to wear shorts under your skirt?”

“Because we have to at school,” she said.

“Okay, but do you know why?”

She shrugged. “For privacy?”

“Yeah, but do you know what privacy actually is?”

This time, when she shrugged, I could tell she was bored and didn’t really know (or care) what I was getting at. And to be honest, I wasn’t really sure how to phrase it. Discussing privacy is one of those topics I’ve dreaded for years because, much like the “stranger danger” talk, I don’t want it to result in cagey paranoia and fear of kidnappers lurking around every corner.  It occurred to me that when I am talking to my kids about their bodies, I usually try to keep things simple: “It’s your vagina, and nobody should be able to touch it but you … and even then, there’s a time and a place for it.”

Privacy is such a vague word, though, and as a result, I feel like I often probably make her more confused instead of less. How do you explain the need for undergarments without basically saying creepy dudes get off on seeing little girls’ panties? On that subway ride home, I tried to talk to my daughter about respect and consent (who’s allowed to touch you, and where), and about permission (both giving and receiving). After that, I asked her about five times if she understood what I meant. She rolled her eyes, nodded, and then asked for a snack.

So, did I get through to her? Who knows. I’ve since brought it up a few times, here and there, figuring that a little repetition might help get the point across. She groans almost every time I tell her how important it is to respect her body and her friends’ bodies. She rolls her eyes when I reiterate that her body belongs to her, and that everyone (even mom and dad) need permission to touch her body. I sound like a broken record, and I think we both find that annoying, but it’s important, and I’m going to keep trying, and try to let her know that I’m always here for her, if and when she wants to discuss any of it.

The privacy conversation is a very layered, very gray area, and thank goodness there are experts. I spoke to two – Cory Silverberg, sex educator and author of Sex Is A Funny Word, and Ellen Friedrichs, a health educator, writer and mom of three kids based in Brooklyn. Here are some awesome tips from both of them:

1. Discuss it with your kids as early as possible. “As soon as they can comprehend speech,” says Silverberg. And break it down by talking about the things we do alone (bathe, touch private parts) versus with others (hugging/kissing with consent), and why we wear clothes or knock on the bathroom door before entering.

2. Try to balance your adult fears with commonsense. “We can know there are scary and dangerous people in the world and work behind the scenes to keep our kids safe,” says Friedrichs. In other words, don’t freak your kids out by telling them frightening stories from the news.

3. Have conversations about respect. Friedrichs suggests broaching the topic with things like, “Every family has different rules about touching, or about bathrooms. It’s important to ask people before you touch them. Even if you just want to hold their hand or give them a hug. And people should ask you, too.”

4. Preach the bathing suit rule. “Explain to kids that no one, not older kids, not babysitters, teachers, or nice relatives, should touch them anywhere their bathing suit covers and if anyone does they should let you know,” says Friedrichs, adding that if they are touched in a bad way, they should let you know. Silverberg adds that it can be very complicated when we tell kids to “say no” if they’re being touched, when in reality it’s not always safe to say no. However, let your child know he should tell mom or dad if/when he can.

5. Don’t let genitals be a taboo subject. “It is also really important to teach young children the proper terminology so that they have words to describe something if it happens,” says Friedrichs.

6. Allow them to touch themselves. Silverberg explains that some kids really love to touch themselves, and there’s nothing fundamentally wrong with that, as long as it’s in private (like at home in the bath).

7. Let kids learn on their own, too. “We want them to be taking calculated risks,” says Silverberg. As adults, we have certain expectations about privacy but kids need to figure some of it out on their own.

**Originally published on Momtastic**

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What it Feels Like to Raise a Child With Angelman Syndrome

When Theo was born in April 2013 in Brooklyn, New York, his parents, Christina Poletto and Daniel Weger, were thrilled to discover that he passed his newborn tests with flying colors and seemed perfect.

“A couple months earlier, our team of baby doctors informed us that because of my age, and according to some blood test results, my numbers for Down Syndrome were elevated,” says Poletto, who is a senior editor for Today.com. “We were thrilled to see that Theo looked great and had adopted the persona of a sweet little newborn right away.”

Within a few months, however, things started to change. Poletto had two pregnant friends with similar due dates, and as she watched all three of their babies grow and develop she realized that Theo was missing his milestones. At 4-months-old, Theo had a weak core and wasn’t turning or moving naturally, and at 6 months his motor skills were non-existent, he was laughing but not babbling, his sleep was poor, and he still had infantile reflexes.

“We initially thought that he had issues with his hearing,” says Poletto. After some testing, they opted for tubes surgery and, immediately following, Theo started moving his head more naturally and was able to tripod-sit for the first time. Yet, Theo’s parents knew something was still off.

“At that point, we thought maybe he had cerebral palsy,” she says. “We’d bring therapists to the house and they’d say they didn’t know what it was, but that it wasn’t cerebral palsy. My husband thought so much about Theo’s incessant happiness that one night he randomly Googled “happy baby syndrome” and the first thing that popped up was the definition of Angelman Syndrome.”

When they consulted Theo’s pediatrician, she dismissed their concerns. “She told us, ‘Boys always take longer, don’t sweat it.’” Although Poletto and Weger were sure it was more than just a natural delay, their pediatrician called them “alarmists” when they requested genetic testing.

Undettered, the worried parents sought a second opinion from another pediatrician. “His new doctor took one look at him and immediately ordered a genetics roundup,” says Poletto. The genetic testing took eight weeks, and within that time, right after Theo’s first birthday, his temperature spiked to 104-degrees Fahrenheit and he had his first seizure. Shortly thereafter, Theo had a grand mal seizure and was admitted to the hospital, given meds, and an EEG (a procedure that tracks and records brain wave patterns); it was then that his condition was confirmed.

“The pediatric neurologist explained that the results of the EEG displayed textbook brainwave pattern for Angelman Syndrome,” says Poletto. “She proceeded to rattle off her Googled diagnosis of this condition, and told us that Theodore would never love us or know that we were his parents…. We couldn’t believe it. It was a horrible delivery of the most important news. We didn’t see that doctor again—we couldn’t face someone who would make such bold remarks about the awareness of our child.”

According to the Angelman Syndrome Foundation, AS is a rare neuro-disorder that can be caused by a missing maternal chromosome 15, the inheritance of two paternal chromosomes, a chromosomal imprinting defect, or a mutation of the maternally delivered chromosome 15. It’s characterized by severe developmental delays, sleep disturbance, speech impairment, seizures, jerky movements (especially hand-flapping or waving), frequent chuckling or smiling, and generally excitable and happy demeanor. Although there is now prenatal testing for AS, detecting rare chromosomal abnormalities, it was not available when Poletto was pregnant.

“If you Google Angelman Syndrome, you’re going to get the worst case scenario for everything,” says Poletto. She added that she couldn’t believe that her smart, present, and aware little boy could be suffering from such a rare syndrome that affects 1 in 12,000 to 20,000 people and is often misdiagnosed as autism.

The genetics test results also came back confirming Angelman Syndrome, but Poletto says that she struggled to accept the diagnosis–and the new community they were a part of.

“The first time we went to the annual Angleman picnic—two hours from our home—we sat outside the gate thinking, ‘These aren’t our people. We’re only here because of Angelman,’” she remembers. “But then I saw angels running around, going to school, responding to their parents expressions, gesturing with iPads for what they needed. I was hesitant, but it opened my eyes to how it can be with an angel. Life doesn’t fall apart.”

Since Theo was diagnosed with Angelman, Poletto and Weger have made it their mission to help him thrive. Two years ago (when Theo was around 18-months-old), they moved upstate where they could be closer to family, and where Theo could go to a special school full time to receive PT, OT, and speech therapy. As a pattern-maker and tailor, Daniel is able to work for himself and therefore has more flexibility to help Theo and be there for the four therapists coming to and going from their home on a daily basis. Besides therapy, keeping up a daily routine helps.

Theo’s day is typically bookended by big, healthy meals. He’s on a low glycemic diet, which has been proven to help reduce seizures. “In between I like to take Theo out of the house. We run errands, hit the park where we get in our walking exercises, attend play dates with other angels, or go out to eat. We’ll often take road trips, too, because we don’t feel that Theo should be limited in his exploration of the world because of his condition. Camping takes a lot of planning and prep to travel with a special needs child, but it’s so worth it to see the smile on his face. He loves it.”

Like his parents, Theo also loves music, and has always connected with it. “He adores the full-size keyboard we have set up for him, and has somehow figured out a way to loop, record, and create amazing cacophonous mixtures of sounds that somehow work,” says Poletto. “We’d like to pursue more music lessons or music-based therapies in the future. I truly believe that Theodore connects with music on the deepest levels, and gleans something from sounds that he doesn’t from the natural world. It’s inspiring to see that sort of connection.”

One of the hardest things about raising a child with Angelman Syndrome has been Theo’s lack of speech. “I wish he could tell me what he wants for dinner,” says Poletto. “He can do open mouth sounds like ‘ma-ma-ma-ma-ma’ which is how he expresses emotion. If he’s hungry he might do more of a whine. It’s incredibly difficult watching a nonverbal child try to convey his frustrations, wants and needs, or express pain.”

However, there is reason for Poletto, Weger, and other parents like them to be optimistic about the future. The Foundation for Angelman Syndrome Therapeutics (FAST) recently received a $5.8 million grant from the Marnier-Lapostolle Foundation, to help develop and speed up life-changing clinical trials.

“The clinical trials range from ketone ester drinks that helps keep seizures at bay, to injections that might help with sleep, to various other therapies,” says Poletto. “There are two AS organizations, and many on the medical board are mothers of angels and they have the brains to back up what they’re looking for. They know AS has been cured in mice, and exactly what to look for.”

Poletto thinks there could be a cure within the next two years, which is both exciting and a little scary. “When we talk about these cures, what does it mean exactly?” she wonders. “Is it going to change his disposition? Is he going to be different from what I love? What if it doesn’t work? What if it has a reverse effect? I hope that wouldn’t happen, but would he regress at all? It’s difficult to contemplate. You don’t want to be in a more difficult spot than you already are.”

Fears aside, Poletto and Weger have high hopes for a cure. A cure could mean improving Theo’s ability to move, gesture, communicate, create, and expand on his intentions and interactions with others and the world. Calming his constantly buzzing mind might improve his sleep and keep the seizures at bay for good. A cure could help Theo express his ideas, opinions, and thoughts beyond facial expressions and gestures and make life less frustrating for him.

“I would love for Theo, and all angels, to benefit from something that will make their lives easier, without removing the magical essence of who they are,” says Poletto. “That is my hope for a cure.”

For more information on Angelman Syndrome, please visit: Angleman.org and CureAngelman.org

**Originally published on Momtastic**

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Why I’m Struggling to Stop Breastfeeding My Toddler

bfeed

I’m looking down at the beautiful, smiling face of my nearly-2-year-old son as he sits in my lap. His soft blond hair, those enviable mile-long eyelashes. He’s cherubic and sweet and perfect …aaand he’s sucking on my boob. Still.

I never planned to nurse for this long. Truly. When I made it to 15 months with my daughter, four years ago, I felt pretty pleased with our end date. She was down to one feed a day and my milk supply was dwindling so I made an executive decision. It made me sad and I worried that our bond would be broken, but she was ready to stop, and so was I. But with my son, it’s different.

This kid can’t get enough. Whether we’re on the couch, playing in the garden, or out at a restaurant, my son will walk over to me, sit in my lap, and assume the position. If I don’t immediately comply, he will help me by grabbing my hand and leading it up to the top of my shirt — like maybe I forgot where my own breasts are. And if you’re wondering: Yeah, it can be kind of embarrassing. He’s getting big. I always swore I wouldn’t breastfeed a child who could legitimately ask for it in words, and yet … “Mommy, booboo!” he shouts. Okay, so “booboo” isn’t exactly the Queen’s English, but the dude knows what he wants, and he knows how to get it.

Sometimes I tell him no. I am not HBO On-Demand. I don’t like to give in when we’re out in crowded places. And it’s not about displaying my sagging rack (well, not much), it’s more the fact that people look — they notice the 3-foot tall child in my arms — and then awkwardly avert their eyes when they realize what we’re doing. What seemed natural and acceptable and my human right when he was a baby, suddenly feels shameful.

I’ve obviously verbalized my paranoia at home because, a few weeks ago, I took my kids out for pizza and when my son started having an epic meltdown, I quickly brought him into my lap to shut him up. To my relief, he stopped crying, but then my daughter said, “Mommy, not inpublic!” I. Was. Mortified. For both of us. At that point I felt obligated to stand my ground, so I nursed for another minute or two, but I couldn’t help wondering why my daughter got so miffed. Was it because she’s a total teenager (at age 5) and everything I do is lame? Did a school friend tell her breastfeeding in public is wrong? Or did I project my own mania onto her?

I suppose I could have used that moment as motivation to start wearing turtlenecks and let the well dry up … but … somehow, I just can’t. My daughter’s freak out was (thankfully) a one-off, and the fact is, I’m not ready to stop for several reasons. First of all, breastfeeding is really f*cking convenient. Your boobs are always there. I’ve lost my keys, my wallet, I’ve run out of the house with an un-charged cell phone, but I’ve never forgotten my boobs. They call breastmilk “liquid gold” for a reason, and mine can keep my son busy when I need to get a bit of work done, lull him when it’s time for bed, and comfort him better than anything else in the world (except maybe Daniel Tiger) when he’s upset.

And there’s another really, really good reason to keep breastfeeding. Aside from the glory of keeping another human being alive and giving them useful antibodies and (possibly) an IQ boost, what it really comes down to is the calories. Breastfeeding can burn up to 500 calories a day, and that is a pretty solid argument to keep doing it. In fact, when you put it that way, I may nurse forever!

Just kidding, I will stop. Eventually. But stopping is going to be hard. The older my son gets, the more stubborn and demanding he becomes. It’s not that I feel powerless, per se, but taking care of two kids on little sleep has worn me down, and most of the time I don’t have the energy to deny him. Giving him the boob is just so damn easy, and it makes him so damn happy, and I want him to be happy. And when I look at him now, curled up in my arms and feeling safe and protected, I just can’t bring myself to take it away from him. You remember that fear I mentioned earlier? The one about breaking the bond between me and my daughter? Well, it wasn’t totally unjustified. I know she loves me, and obviously I love her more than anything … but I do think she stopped needing me as much when she stopped nursing. I’m not ready to be needed less by my son. Knowing that within a few days or weeks he will forget our bond makes me sad. It’ll be like living with a person with alzheimer’s, only — okay — not at all.

So I’ll try to get there. Maybe soon, maybe not. Maybe when he learns to say, “May I have some milk, please, Mommy?” Maybe then I’ll close up shop.

[Originally published on Momtastic.com]

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What will the Orlando tragedy mean for my kids?

IMG_20160526_210732For about a year, my 5-year-old daughter decided she wanted to be a lesbian. I don’t think she totally knew what it meant, but she was used to me encouraging her to be and love anyone — boy or girl. Maybe my repeated emphasis on “love is love” slanted her decision, but it made me proud, too. It still does, but it makes me scared now, too. Knowing that transgender people can’t use the bathroom of their choice seemed oppressive and immoral a few weeks ago, but after the tragedy in Orlando, I am suffocating in sadness.

It is too tragic to comprehend.

I want my kids to grow up to be whoever they want to be, but not if it means they’re going to be gunned down. On the other hand, I want my kids to go to school and grow up, too. Should I let Sandy Hook and Columbine scare me out of sending them to school?

It seems like there will always be another tragedy, as long as the NRA allows such unrestricted access to assault weapons, and it makes me feel so helpless. All I can do is sign petition after petition, support every effort to raise funds and awareness for the Pulse victims and LGBTQ communities around the world, and Like every article posted remembering the beautiful victims that were so heartlessly massacred this past weekend in Orlando.

I could also urge my kids to do whatever it takes to fit in. When they’re old enough to hear the horror stories of such senseless acts of hatred and destruction, I could beg my kids to be straight and “normal” and to lay low and stay out of harms way. I could beg them never to go to nightclubs, or fast food restaurants, or even the post office. But I can’t, I don’t want to, and there wouldn’t be any point because harms way is never in the same place twice.

Who knows if my daughter will grow up to be a lesbian, and who cares. All I want is for her to grow up in a world with stronger laws on gun control, more laws supporting the rights of LGBTQ people, and no more hate.

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