Love That Max

The secret sauce to my sanity and Mom 2.0

noreply@blogger.com (Ellen) — Wed, 16 May 2012 11:00:00 +0000

For the record, the secret to my sanity does not have anything to do with the communal shower room at the Versace Mansion in South Beach, even though that's where I'm standing here and it wouldn't suck to have one. You know, in my very own mansion.

Staying sane also doesn't require a visit to this beautiful hotel, even though it seriously helped.

This woman, actually, is part of the secret to my sanity. Her name's Ellen (wahoo!) and she writes over at Confessions of an IT Girl. She's also mom to a kid with special powers and one of the funniest women I've ever met, the kind who give you an incontinence problem.

The secret to my sanity is this: having a passion other than my family. For me, this blog is that passion, and I love discussing what I do with other bloggers and hearing how they spread the word about what's important to them. Last Sunday I got back from the Mom 2.0 Summit in Key Biscayne, and I've been on a high ever since. It's a wonderfully intimate conference (about 400 bloggers), and welcoming to both newbie and seasoned bloggers.

My ride to the hotel: the 2012 Honda Odyssey, with Cecily K of Uppercase Woman and Babble's Mom Crunch in the front seat. Behold the super-wide DVD screen; it can be split, so the kids can each watch their own shows. If we got that car, Max and Sabrina would never, ever leave it.

If you ever decide to run away from home, head straight to The Ritz Carlton at Key Biscayne

One of my favorite spots: Rumbar, with its Old Havana vibe.

One night, we set out to break a world record for the most widespread social network message in an hour (Justin Bieber fans hold that honor). Hundreds of women stood around a courtyard, tweeting the message "You inspire me. #DoveInspired." (If you got that tweet from me, that's why and if you didn't, my thumbs got tired and I'm sorry). That's Emily of The Motherhood and Betsy of Thinking Cap Creative Solutions going at it, above, with Liz of Mom 101 in the background. If we scored, Dove was going to donate $15,000 to Girls Inc. We came close, but the dang Bieber fans took over.

I was on a Hot Issues of 2012 panel with Kristen Howerton of Rage Against The Minivan and Samantha Ettus of Personahood; Buffy Wicks, National Operation Vote Director for Obama's re-election campaign, moderated. The conversation centered around advocating for what's important to you, and sharing perspectives through personal stories. Kirsten told of a post she wrote recounting her family's experiences getting denied healthcare, and calling for reform. I mentioned my video about the word "retard" and how it got attention for an issue important to me and many other parents. And of course, we got into a lively discussion about ye olde work/family struggles.

Listening to other speakers at the conference was both inspiring and tearjerker-y.

• "Think about what's pleasurable, not just what's possible," said Brené Brown, Ph.D., a professor of social work and motivational speaker, talking about what's next for women. She always gives me food for thought and courage, especially when she said "The most connected posts are the ones that make you nervous to hit publish and sometimes you just need to put it out there." (Check out her powerful TED talk).

• "They represent the deep breath that we often forget to take," is how entrepreneur Lee Rhodes describes the handmade glass candleholders her company, Glassybaby, produces. Back in 1998, she had three young kids and lung cancer; dropping tea lights into candles gave her serenity and hope. So far, she's given $911,000 to funding cancer research—a beautiful thing.

• "Whenever you launch something new, you can't succeed unless you're crazy passionate about it, emphasis possibly on the crazy!" said designer Liz Lange, who used to personally answer customer service calls and emails when her company started. Screech if you relate to "crazy!"

• "Companies need to invest in working moms. Even if moms work shorter hours, they get things done."—Brilliance from Kat Gordon of Maternal Instincts in her panel on using social media to make change happen.

• "My mom launched a company"—that's what this little girl's message says. Her mom is Kathryn Tucker of Red Rover, an app that helps you find local friends and activities. As Kathryn spoke of her angst about juggling her business and her family, she teared up and suddenly a lot of us were reaching for tissues. As a working mom, I know exactly what it's like to get caught in that tug of war.

I made some new friends including Charlotte, a mom of five who writes Handmade Charlotte (of course her business card was super-cool); Jessica of Project Night Night (a nonprofit that delivers blankets, books and stuffed animals to kids in homeless shelters); and Melanie of Coupon Goddess, a mom of four (and a very funny goddess). Meeting moms of four and five kids makes your own life seem instantly more sane.

Mom 2.0 has a rep for awesome parties, and they rocked. At Friday night's White Party, even New Yorkers like me gave up black. Saturday night: party at the Versace Mansion! It's now a private hotel (rates start at $800 a night, though you get your own butler), and as over-the-top as I expected. My lovely date: Jennifer of Life's Dewlaps. My dress: a turquoise MaxMara wrap dress (also Not Black!) that Kimberly Garrett of Plush Fashion Styling helped me pick out. Now I need to hang out at the Versace Mansion more, because the dress matched the color of the pool.

The 1000 Mosaics Pool

The main courtyard

The Velvet Lounge, next to the shower room

So there you have it, Mom 2.0 2012: fun, glamour, glitz, information and inspiration. Mom 2.0 2013 will be at California's Ritz-Carlton Laguna Niguel. It seems like a fab place to pursue your blogging passion (and preserve your sanity). And, wow, would I love to meet you there.

And then Max grew up to be a barista

noreply@blogger.com (Ellen) — Tue, 15 May 2012 10:40:00 +0000

For years, Max has had a table in his room he can write on with an erasable marker. It's a cheap one I got years ago at Bed, Bath & Beyond that I need to replace, because it's too baby-ish for him. Thing is, it comes in handy: Sometimes, he likes to draw on it or practice writing his name. Most recently, he likes to ask me or Sabrina to write out a list of preferred drinks of notable people in his life:

Max drinks chocolate milk

Caleb drinks water

Mommy drinks iced coffee

Daddy drinks hot coffee

Sabrina drinks lemonade

And then, he likes to recite the list, again and again and again. I love it because he's reading (well, at this point he's got it memorized), and most of all because he's articulating words. Lately, he's been trying so hard to say stuff.

For weeks, Sabrina's sat with Max, wrote out the drinks and listened as he read—an awesome thing. But she's getting tired of doing it, as you might glean here. Max usually does a nice job of speaking the words when she's not speed-pointing.

Ah. Sibling love.

What I've learned about motherhood from my child with special needs

noreply@blogger.com (Ellen) — Mon, 14 May 2012 10:43:00 +0000

I wrote a guest post for the Huffington Post this weekend, part of a Mother's Day series. They asked me to write about what I know about motherhood from being a mom of a child with special needs. A snippet:

Perfection is in the eye of the beholder. Some people might look at my son and see a child who walks a little unsteadily at times, speaks unclearly and has trouble grasping things. Me, I see a child who miraculously walks, talks in his own way and does his best to make his hands work even though they're often tight from the cerebral palsy. I see the ability in his disabilities. I see Max, a child as perfect as any other—and, at times, as bratty as any other. (Hello: He's a kid with special needs, not a saint.)

You can read all of it here, at Huffington Post. And, yes, I included a couple of classic Max photos, including this—one of my all-time favorites.

If you have a chance, please also check out:

Today is No Mothers Day, Too: My post on Babble Voices about why 1000 women are going to die today, and how we can help.

The God Box: Lessons My Mom Taught Me About Life... After She Died: A beautiful, inspirational post by the author of a new book.

A boy with cerebral palsy walks to his U.S. Marine dad for the first time: a must-see video

noreply@blogger.com (Ellen) — Fri, 11 May 2012 21:30:00 +0000

If you have a kid with cerebral palsy or another disability and you were told he might never walk, you might know how it feels to see your child take his first steps. Seeing Max toddle from Dave's arms into mine, with a big grin on his face, was one of the happiest moments of my life. I can't imagine how it feels, however, to be a soldier stationed abroad who's never seen his child with cerebral palsy walk—and come home to find that he is.

On Wednesday, Melissa C. put this video up on Welcome Home Blog, a site with videos of military homecomings. (Thanks to reader Jenny for telling me about it). As Melissa writes, "When my husband left on his deployment, our 6-year-old son could not walk on his own. He has cerebral palsy. Doctors originally said he would never walk or do much of anyting. While daddy was away, he learned to walk. For his homecoming, we set it up for Michael to walk to his daddy for the first time ever! We kept the fact that he could walk a secret the whole time his dad was gone."

Watching this video took me right back to the day Max first walked; I sobbed after I watched it. I'm so happy for these parents. And if I know anything, I know that boy will keep right on amazing them.

Image: Screen shot from the video

The best Mother's Day cards ever

noreply@blogger.com (Ellen) — Fri, 11 May 2012 13:07:00 +0000

Mother's Day came early at our house, because the kids were so excited to give me what they'd made. Also, as Dave excitedly noted by phone last night (he's been on a business trip this week), "It's less expensive to send flowers on Thursday!" OOOOOOOOOKAY. The roses are beautiful and it's the thought and counts that all, but I think maybe I didn't need that thought?

Bargain roses still smell as sweet

Max's card made me particularly happy because, well, you know. It said:

I think of all

The things you do

And then I know why

I LOVE YOU

Everything I do for Max is selfless and unconditional, but it's nice seeing that in writing. Although I thought he loved me for my charm and good looks.

I also got a Mom's Day plant from Max. With purple flowers, of course.

Sabrina's handiwork, also The Best Mother's Day Card Ever

She went with "You are the best mom in the world!" on her card. I am going to remind her of that the next time she has a meltdown when I won't let her do something. Actually, maybe I should just tape that to my forehead and walk around with it.

So there we were, enjoying Mother's Day on a Thursday night. Party in Mommy's bedroom! I let the kids crash in my bed, and then we played this hysterically weird game where we all took turns pretending we were crying in different voices, and then we jumped on the bed and ate string cheese. It was an awesome pre-celebration, and then I get to sleep late on Sunday. Wheeeee!

Hope you have a great Mother's Day! If you pay it forward to another special needs mom and leave a treat on her doorstep, I'd love to hear about it.

From my "little things that make me happy" files

noreply@blogger.com (Ellen) — Thu, 10 May 2012 10:45:00 +0000

I love that he is still able to comfortably fit on top of the kitchen counter. Because for all the years I worried that Max wouldn't grow up and do things soon enough, I now fear he is growing up too fast.

Press Here: a supercool app giveaway

noreply@blogger.com (Ellen) — Wed, 09 May 2012 10:59:00 +0000

The kids have been seeing spots lately. Lots and lots of spots. I'm not worried—actually, I'm thrilled. It's because I got an app to review, Press Here, and Max and Sabrina are fascinated by all the cool and creative spotty stuff it does.

The app is based on the bestselling book Press Here, by Hervé Tullet, that's all about using your imagination. Kids pretend that the dots they're pressing, shaking and blowing move around. Of course, the dots actually do move in the app, though the concepts remain simple and imagination-sparking.

I like that the 15 games are not winning-driven—kids can explore, draw and just have fun with blinking, winking, multiplying and colliding dots. They help with hand-eye coordination and encourage pointing, a Good Thing if your kid has fine-motor control issues (or a fondness for iPhone apps so strong, she rolls out of bed and starts playing).

Max is mesmerized, despite the fact that there are no purple dots (still his only favorite color). He particularly enjoyed Studio (drawing with dots that bop around); Sabrina is all about Music Box (where you "compose" your own song by pressing various dots). "You can do whatever you want!" she says of the app. "There's so much stuff to do, it's not just one game." Press Here recently got a rave review from Gadgetwise on The New York Times.

You can get Press Here for your iPhone and iPod Touch (99 cents) or iPad ($1.00), and it's great for kids young and old—Tap Tap has become my go-to activity during my commute home from work.

Yes, I have a giveaway!

One winner will receive a copy of the Press Here book, a code for the iPhone app AND a code for the iPad app. Woo hoo!

There are two ways to enter:

• Check out the iPhone app on iTunes and leave a comment with your thoughts about it.
• Check out the iPad app on iTunes and leave a comment with your thoughts about it.

This giveaway is open to residents of U.S. and Canada until Wednesday, May 16 at 11:59 p.m.; I will randomly select the winner and alert you by email.

Note, you must leave your email if yours is not visible on your blog or your entry will be invalid.

Disclosure: This is a sponsored post; I received free copies of the app and a book, but the opinions expressed here are my own.

7 recent photos I love

noreply@blogger.com (Ellen) — Tue, 08 May 2012 10:50:00 +0000

I wish I had more time in life to do photography. Hobbies? What hobbies? Mine consist of raising kids, talking on the phone with the insurance company, swiping Max's Cheez Doodles and sleeping.

During our Arizona vacation, though, I had time to take some purposeful photos—ones where I thought about composing shots and used my actual camera, as opposed to the quickie pix I take on my iPhone (not that there's anything wrong with quickie shots or quickie anything). I love the above one because, and maybe this sounds corny, I look at it and think of how strong Max stands.

A saguaro cactus. It blossoms in May or June, and the flowers last only for 24 hours.

She looks so happy here.

This makes me think life is filled with possibilities.

Crema de Tequila at La Hacienda (and yes, it was delicious)

Max. Wandering around a pool independently (with Dave in the background standing close by). Amazing.

Ansel Adams or Annie Leibovitz, I'm not, nor do I aim to be. I find the process of leisurely taking photos, crafting shots and editing them relaxing, fun and satisfying. I need more of that kind of activity in my life.

If I had time on my hands, I'd also read a lot more books. Ride my bike (dusty and tires deflated, sitting pitifully in my garage). Make craft projects. Do more volunteer work. And, oh yes, nap.

How about you: What would you do if you had more free time?

Pay it forward to another special needs mom

noreply@blogger.com (Ellen) — Mon, 07 May 2012 10:50:00 +0000

Mother's Day is awesome and all, especially if you get to sleep late, but I have a way to make it an even sweeter celebration: Show another special needs mom some love.

My idea comes from one I read on Cozi, a free site that helps moms organize their lives. Basically, you're a Mother's Day Fairy: Just pick another special needs mom in your neighborhood and drop off something special on her doorstep on Mother's Day, with a note. Your gift doesn't have to be major—think flowers from your garden, a few pieces of candy tied with ribbon, a $10 gift card to Starbucks. You can do this anonymously or not; it really is the thought that counts.

I was at the Mom 2.0 Summit this weekend; the Teleflora people were there, and they've offered up the above Premium Charm & Grace bouquet a mom can send to a special needs friend. (You won't even need to leave the house to be a Mother's Day Fairy!) The bouquet, worth $75, includes light-pink roses, pink asiatic lilies, light pink alstroemeria and white waxflower; it's accented with ferns and delivered (free!) in a pink glass vase. (NOTE TO HUSBAND: IT'S GORGEOUS, HINT, HINT).

RULES OF ENTRY

• To enter, leave a comment below about a mom of a child with special needs you'd like to play Mother's Day Fairy for (no need to name her, of course), and why.

• Valid email address required; I need that so I can contact you. So if your email is not visible on your blog, you'll need to leave it in your comment. If there is no email, your entry won't count.

• This giveaway is open to residents of the U.S.

• This giveaway is open until Wednesday, May 9 at 2:00 p.m.

WINNER DETERMINATION

• I'll randomly pick the winner and alert you; you'll then need to email me the name, address and contact phone number of the mom to whom you want to send the bouquet.

• If you do not respond by 9:00 a.m. on Thursday May 10, I'll need to pick another winner (the bouquet has to be ordered on Thursday to arrive in time).

Me, I know exactly who I'm visiting on Mother's Day, with a Starbucks gift card. I hope you'll join me in being a Mother's Day Fairy, even if you don't win the bouquet to send. If you've done volunteer work, you know that giving feels even better than getting. Ready to give? Of course, we all deserve major flowers on Mother's Day. Because we rock.

UPDATE This giveaway is closed; the winner is Elizabeth. And one of Elizabeth's friends is soon going to be very, very psyched. Meanwhile, I hope you pay it forward on Mother's Day in other ways.

A new special needs video series and other Stuff Worth Knowing About

noreply@blogger.com (Ellen) — Sat, 05 May 2012 11:00:00 +0000

A video series about kids with special needs: Check out Our Special Life on YouTube from CaféMom Studios. Each episode profiles a different family that has a child with special needs; this shot is from the video about Anabel, a five-year-old girl with Isodicentric 15 who has autism. As I watched them, I was reminded of how much special needs parents have in common, no matter what our children's diagnoses are. So true, right?

My new go-to pair of comfy pants: I recently won a $100 Lands' End gift card from Blueprint For Style, and I was psyched: Lands End is my source for basics. I'm obsessed with the Starfish Stretch Crop Pants; they're super-soft and they have this wide waistband that holds in your mummy tummy (not that YOU have one, but I most definitely do). Be warned, you might be tempted to sleep in them, they're that lovable.

A comedian who does his routine with a speech device: Meet Lee Ridley, a British comedian with cerebral palsy who uses a voice synthesizer, LightWriter, to speak his jokes. He describes himself as "Like Stephen Hawking (but cleverer and better looking)." Love his sense of humor and his ability to poke fun at himself; thanks to Shannon at Thinking Person's Guide To Autism for sharing it.

Way to make your computer work better: My MacBook Pro (I am a diehard Mac girl) had been running on the slow side and occasionally crashing, and when a company called Crucial asked if I'd like to test out a memory upgrade I said sure. They're dedicated to taking the fear factor out of DIY memory upgrades and sure enough, it was easy. I just downloaded a system scanner, which then recommended taking my 4GB of RAM to 8GB to boost performance; the cost would be $60. The modules arrive in the mail, and you just unscrew the back of your computer and slide them in (you need a teeny tiny screwdriver). My computer has been running more smoothly now. Word to techphobes like me: Yes, you can do this yourself.

The skin problem women don't know they have: For most of my life, I was psyched that I had a naturally rosy flush. Then suddenly, I started getting these little spider veins on my face. It was rosacea, a skin condition that typically sets in after age 30 and affects some 16 million Americans; only 10 percent are treated for it. I keep mine under control with a topical cream, Finacea. Cynthia Nixon also has it, and made this Public Service Announcement about it. Get more info over RosaceaFacts.

Take a sec and vote? A reader asked us to help out a friend of hers. Amy Chally has cerebral palsy; she wasn't able to afford a service dog, but was able to get one for free through the nonprofit Canine Companions for Independence (CCI). Amy's entered Yazzen into the Humane Society's Hero Dog Awards; if they win, CCI will get $50,000. The contest goes until June 30 and you can vote once a day here.

Yes, people with disabilities can be parents. Why is that shocking?

noreply@blogger.com (Ellen) — Fri, 04 May 2012 10:45:00 +0000

Authorities are threatening to take away the baby of a Canadian couple who both have cerebral palsy unless he receives round-the-clock care. It's a mind-boggling story, and I'll share it here in case you haven't yet heard about it:

Maricyl Palisoc and her partner, Charles Wilton, are the proud parents of William, one month old. They live in Ontario. Before he was even born, CTV news reported, a social worker at the hospital called the local Children's Aid Society (CAS). CAS decided the child was going to need 24-hour care because they didn't believe the couple were capable of caring for William. News reports say they threatened to take him away unless the couple found an "able-bodied" person to offer 24-hour care.

Maricyl and Charles agreed and now have that help, but they are fighting for the right to take care of their own baby as they choose. Would you want a full-time attendant in your home tending to your new baby because you weren't deemed fit? Right. Today, Maricyl and Charles are meeting with the CAS to present a care plan they've created with the Coalition for Persons with Disabilities. I can't even imagine how they must be feeling.

It just doesn't seem possible that this is happening in 2012. Sadly, I think it shows just how deep-rooted misperceptions are of people with disabilities.

Like any people with cerebral palsy, Maricyl and Charles are affected differently by the condition. Maricyl has certain issues with hand mobility, though she can change diapers, breastfeed, and do the things moms do. Charles uses a power wheelchair. Both of their speech is affected; neither is cognitively impaired. They already receive some help from care workers. Seemingly, the couple is capable of handling an infant, and as William gets older and new challenges arise, they will deal.

Lest you think this is a Canadian thang, you might recall the story of Kaney O'Neill, a mom in her 30s from Illinois who's a quadriplegic. Her ex sued for custody of their son, Aiden, when he was 10 weeks old. While Kaney's issues necessitate having full-time help—she has minimal use of her hands and can't feel anything from the waist down—the bottom line was she was fit to mother her child. She won the custody battle, and now has a live-in caregiver, a service dog and adaptive equipment, per ABC News. "He adapts to my abilities," she's said of Aiden. "It's amazing. If he wants me to read a book, he brings it, puts it up on my tray."

As for Maricyl and Charles's situation, I am astounded by the misdirected efforts of those Canadian authorities. The agency should spend its energies protecting kids with drug-addicted parents and others who are in unfortunate situations; little William is not. Now, I don't know Maricyl and Charles but they seem like perfectly rational, reasonable, smart human beings. Both seem to possess those key things necessary to be a competent parent: Dedication. Common sense. LOVE.

But the bureaucrats see just one thing: a diagnosis of cerebral palsy.

What will it take for the world to see the ability in disability? The question haunts me. I desperately hope that as Max and all of our kids get older, perceptions will change.

"I'm disappointed," Kaney O'Neill told the news, "that the courts allow for someone to question your ability to have custody based on your disability."

Look, world: Just look at how Kaney O'Neill is doing it.

UPDATE After the couple and agency met, per a CBC News update, the Children's Aid Society is backing off and is no longer threatening to remove William from his parents.

Image: screen shot from CBS news video

Ashton Kutcher's twin brother fights to spare kids from cerebral palsy

noreply@blogger.com (Ellen) — Thu, 03 May 2012 10:55:00 +0000

I never knew Ashton Kutcher had a twin brother, Michael, or that he had cerebral palsy. But now I do and I am wowed. Recently, Michael traveled to Washington, D.C., to push for more research funding for preventing CP. Michael has a mild form that affects his right side, hearing and vision. He's befriended an awesome little girl, Bella, who has more involved CP; she was there with him.

One in every 268 kids has cerebral palsy and nearly 800,000 Americans have it, according to Reaching For The Stars (RFTS), a nonprofit that advocates for more CP research. It is the most common motor disability in children. And yet, there is no dedicated funding at the National Institutes of Health or the U.S. Centers for Disease Control for cerebral palsy research.

This was Michael's second trip to Washington as Executive Director for RFTS. Curious, I looked him up on LinkedIn because I like to hear what adults with CP do for a living—it inspires me. Michael works as an assistant manager a company that handles retirement services in Cedar Rapids, Iowa.

"I have to be the voice for a child that literally can't speak," Michael says.

A-men. It's great to have someone with smarts, heart and celeb cache (always a plus) advocating for kids. Cheryl Hines, who has a nephew with CP, an ambassador for United Cerebral Palsy who's on the organization's national board of trustees, actively fundraises for them. Eva Longoria has a sister with an intellectual disability, and has lobbied Congress to prevent service cuts for those with ID.

"Keep moving the rock on CP on cap hill today brother! Love u much" Ashton tweeted to his brother the day he went to D.C.

"Thanks brother, crushed the rock today !!! much love" Michael tweeted back.

And now, I have a crush on both brothers (and Dave will have to deal.)

Here's how you can easily email lawmakers to support federal funding for cerebral palsy research; the goal is 100,000 emails by the end of May.

The sound that's better than Prozac

noreply@blogger.com (Ellen) — Wed, 02 May 2012 10:45:00 +0000

For a couple of months, Max has toted around a Cars 2 DVD wherever he goes. It's sat on the bathroom sink when he's taking a bath. He's slept with it by his side. It rode with us in the jeep on our desert tour in Arizona.

Max particularly liked that the back of the case had stickers that spelled M-A-X. But during our vacation, the A and X fell off; I joked with him that his name was "M."

After we got back, Max kept telling me he need a new Cars 2. Twenty bucks is a small price to pay for his happiness. So I ordered it from Amazon. And I recorded the moment I handed it to him, for all posterity—and for me to listen to anytime I'm down.

There is nothing in this entire world that lifts me like that squeal.

What does your kid do that's like Mommy Prozac to you?

IEPs make me cry

noreply@blogger.com (Ellen) — Tue, 01 May 2012 10:40:00 +0000

Last week was Max's IEP meeting (that's Individualized Education Program, for those of you who've never had the "privilege" of attending one). This is Max's sixth IEP, and everyone on his school Team Max showed: one PT, one OT, one speech therapist, one teacher, one nurse, one school administrator and our district coordinator.

I have a tradition at these IEPs, and it doesn't involve bringing a thermos of daquiris, though that would be ever so helpful. Every year, I get teary. Seeing all the goals for the upcoming year would make me very aware of the long road that lay ahead for Max. So would hearing his therapists discuss his challenges, even though there was always progress to report, too. (Luckily, I've never had to put up a fight for more services with his current school.) IEPs are meant to make sure your child gets the education he needs and deserves—a good thing!—but they're also often a tough reality check for parents. Yes, my child has special needs. Many of them, in fact.

This year, it was different. It's my own maturity as a special needs parent, I think, and the fact that Max is really forging ahead. One by one, as his team went around the table, every single person told of the significant progress Max has made this past year. His teacher spoke about how his confidence is building and his enthusiasm to spell and read. "I've seen huge improvements," she said. He's fully potty trained at school (we're still working on it at home). In fact, he's now giving high-fives to another kid in his class in potty training after she goes. His occupational therapist talked about him writing his name and other letters (so far he's nailed M, A, X, T, H, L, E, F, I, O, P, C). His physical therapist mentioned his ability to walk up and down the stairs mostly unassisted. The speech therapist discussed his ability to put sentences together on the iPad and his growing comprehension.

Wow. I knew Max had been doing amazing things, but hearing them all at once—corroborated by people not related to him!—felt incredible. I was seriously proud of my boy.

Of course, we discussed his goals for the upcoming year; Max will be learning to tell time and working on writing numbers. We'll be focusing on life skills, too, like pulling up and down pants for the potty. We're also going to focus on question-asking. Max recently started asking a q for the very first time, and now likes to use it regularly:

Me: "Max! We'll go to Disney World again."
Max: "Today?"
Me: "We're going to a playdate at Nina's house!"
Max: "Today?"
Me: "I'll get you a Cars 2 backpack!"
Max: "Today?"

On top of my wish list: helping Max more clearly articulate words. He's talking so much lately, though he's hard to understand. The speech is a complex issue for him, particularly because his tongue doesn't move the way it needs to. But Max being Max, he keeps trying his best.

So there I was, giddy with pride. And you know what made me cry?

"He's just the happiest kid," his speech therapist said.

I stared down at the paperwork and scribbled something so nobody could see the tears. I'm not quite sure why that made me lose it; there were plenty of other reasons to weep tears of gladness. But it did.

Found: the mystery girl with Down syndrome who's a cruel web joke

noreply@blogger.com (Ellen) — Mon, 30 Apr 2012 10:45:00 +0000

Perhaps you've come across the photo—in the last few years it's spread around the web, typically posted with derogatory captions like the above.

The girl in the picture is British and now a teen, I found out this weekend; her name is Heidi Crowter. Years ago, someone snatched her photo from an online parents' support group.

Most recently, web trolls posted her pic on Facebook with the caption "Lose your virginity to a retard." One site (I refuse to link to them) posted this nasty article, which I found out about through Hannah Jacobs' powerful Facebook group Special Needs Watch: Hall of Shame:

Heidi, 16, is aware of what's going on. "Heidi has told me she is very upset by the sites and she turns her head away when we have them on the computer screen," her mom has said.

I am raging as I write this. Even if I didn't have a kid with special needs, I'd find it completely impossible to understand why anyone would do this. Are these people so pathetic they can't find anything else in life to joke about? Are they so ignorant that they can't see why this is cruel? Are they heartless enough not to care? Evidently, yes, yes and yes.

Rage.

For those people who've commented that there's nothing wrong with casually using the word "retard": I wonder if they'd see anything wrong with what happened to Heidi. That's the thing: Keep using the word "retard" as a joke and it perpetuates the idea that those with Down syndrome and other special needs are worthy of being made fun of. It gives the jerks of the world license to keep doing their jerk-y thing.

What happened to Heidi is alarming and outrageous. If anything good were to come out of it, I hope it raises awareness about how much prejudice still exists toward those with special needs—and why it's important for all of us to do what we can to encourage respect for our kids, and others like them.

A teen with Down syndrome crowned prom king, and my dream for future kings

noreply@blogger.com (Ellen) — Sat, 28 Apr 2012 02:30:00 +0000

Last weekend Max Jackoski, a high school junior with Down syndrome in Lake George, New York, was named prom king. His mom, Lisa Jackoski, taped this video of his coronation. As she said, "Many of his classmates approached us after the coronation and said they decided as a group that it would mean more to Max than any of them." Max got a standing ovation.

He attended prom with a classmate, Hahnah Saroff, who'd reportedly asked Max's parents permission first before asking him out. "I wanted to go to prom with Max because I knew I would have a fun time," she's said. "I would see him at school or at the store down the street from our houses and he always had a smile on his face. His joyful attitude was contagious."

The trend of teens with Down syndrome being named prom queens and kings is all sorts of awesome, and inspiring to me as a parent of a kid with special needs. What I hope for is the day when those with Down syndrome, cerebral palsy or other special needs do not make headlines such as "Lake George Prom King Defies Odds." Because a lack of media attention would mean a prom king or queen with special needs is typical. No biggie. Just another cute, popular teen scoring classmates' votes and a crown.

Someday.

For now, this is real progress. Max is prom king, his family is psyched, he is psyched, and I am so lifted by his bliss.

Image: Courtesy photo

A visit to Scottsdale and a whole lot of family fun

noreply@blogger.com (Ellen) — Fri, 27 Apr 2012 10:40:00 +0000

Our family trip to Scottsdale, Arizona can best be described as an insane amount of fun. There's good reason Travel & Leisure named Scottsdale one of the best warm-weather family adventure destinations. Before we went I did lots of research on stuff to do, and prayed for some stuff not to do (read: lounge by the pool).

WHERE WE STAYED IN SCOTTSDALE

The Hyatt Regency Scottsdale Resort and Spa at Gainey Ranch is a 27-acre wonder framed by the McDowell mountain range. It's beautiful, family-friendly and conveniently located to cool stuff.

Let's start with the view from the lower lobby (this is not a postcard, I swear)

Our room, #3511. I think the kids would have been content if we roomed in a closet, they were so psyched to be there.

The view from our room

Part of the 2.5 acre water playground, which has ten pools and a sand beach. Sabrina loved the three-story waterslide and would be quite pleased if we got one in our backyard, only we'd need a pool to go with it.

Look! No kids! Ahhhh, the adult-only pool

Sabrina tested out an outdoor bed and decided she'd like one in our backyard, too. I can't wait till she strikes it rich.

The Hyatt is home to the Native American Learning Center, a showcase for the land, art, language and culture of the Hopi, with cultural interpreters on hand to guide visitors and answer questions.

The hotel has a whole lot of activities—during our stay they offered a Kids' Tennis Clinic, face painting, Native American Dancers, aqua volleyball, S'mores by a campfire and a poolside movie screening. Somehow, I missed the high-intensity Boot Camp fitness class. There's also a kids camp that's open daily, Camp Hyatt Kachina; four tennis courts; jogging and bike trails; gondola rides and a 27-hole golf course.

At night, local bands played and we all liked to hang out and listen (as you may have heard, Max is now a groupie).

Another favorite spot (for me!): Spa Avania, an oasis with steam rooms, saunas, gardens and pools ("avania" is Greek for tranquil). There's also a fully-equipped fitness center. Somehow, I missed it.

The spa treatments are geared toward the body's daily cycles: morning (awakening and revitalization); midday (restoration and balance) and evening (relaxation and renew). Not available: a treatment for pre-bedtime meltdowns, that other significant part of a parent's day. Guests can choose from 10 playlists. I went with Desert (flute music) for my Crushed Pearl Facial. I looked so glowy and blissful afterward, it's a wonder the kids even recognized me.

WHAT WE DID IN SCOTTSDALE/PHOENIX

You need a car to get around the area, and also so the kids have a backseat to fight in. Favorite car games: Pull Each Other's Hair and Spot The Tallest Cactus. We had some interesting conversations on road trips, like this gem:

Sabrina: "If you love something, don't marry it."

Me: "WHAT?!!! Where did you hear that?"

Sabrina: "That's what my teacher told us!"

Me: "WHAT?!!!"

A couple of nights Dave and I got out on our own; my friend Sara at Saving For Someday lives in the area and she introduced us to a wonderful high school junior, Melissa. God bless vacation babysitters!

Old Town, Scottsdale

On our first evening in Scottsdale we wandered around Old Town, a charming part of the downtown area complete with wooden sidewalks, hitching posts and eclectic clothing, specialty and gift stores. There are free trolleys and if you're there on the second Saturday of the month, at 10:30 a.m. you can get a free tour through Ultimate Art & Cultural Tours.

Sabrina, ready for a showdown

We got sundaes at Sugar Bowl Ice-Cream Parlor & Restaurant, an old-fashioned soda fountain run by the same family since 1958. If you read The Family Circle comic strip growing up, you might recall that local Bil Keane occasionally mentioned it.

There's a game room in the back too, which makes it doubly hard to get kids out of this place!

Musical Instrument Museum, Scottsdale

Scottsdale is home to the first global museum of instruments, just two years old. It has 2500 instruments and artifacts from more than 200 counties on display. The wireless headsets every visitor gets automatically tune in to the videos mounted on the displays so you can hear the sounds of the Beijing Opera or drums in Cuba (the galleries are divided by continent). The Artist Gallery houses instruments from famous musicians including Paul Simon, Eric Clapton, Carlos Santana and the Black Eyed Peas. You can spend a good several hours here before the kids start to whine, and then you can bribe them with treats from the lovely café so they'll stay a bit longer. Not that I know any kids like that.

The piano on which John Lennon wrote Imagine

In MIM's Experience Gallery, where you can play guitars, gongs, drums and other stuff. The kids loved it. Nearby is a Family Center room filled with games for families in need of a break.

The Mongolia display in the Asia gallery

McCormick Stillman Railroad Park, Scottsdale

A mini train that rides around a park? Check. Trains to explore and model train displays to check out? Check. Antique carousel and play area? Check. Max heaven? CHECK!

The Magma Arizona Railroad Engine No. 6, which served the mining railroads of Arizona for 54 years and not once did any passenger ever complain their wireless connection wasn't working.

Inside the restored Pullman car; Max said he wanted to sleep here.

At The Model Railroad Building, full of cool displays

The Hall of Flame Fire Museum, Phoenix

Like many kids, Max has a thing for fire engines. I didn't, until I visited this museum, the largest of its kind in the world. It is a humongous warehouse filled with 90 restored pieces of fire equipment dating from 1725 to 1969, including ones from England, France, Austria, Germany and Japan. There's also a National Firefighting Hall of Heroes, which honors firefighters who died in the line of duty or who have been decorated for heroism. Every visitor gets a binder that gives detailed information about each display.

Max chose the self-guided tour

The fire alarm system that served Glendale, California from 1925 to 1970

Before there were headlights. Even if you and your firetruck-obssessed child never make it here, he'll enjoy checking out the website.

The Phoenix Zoo

No trip for us is complete without hitting the local zoo. Phoenix's is home to more than 1300 animals, including 200 endangered or threatened species. There are four trails—Africa, Tropics, Children's and Arizona—and you can rent a pedal boat, splash in the fountains of The Leapin' Lagoon and hang in a petting zoo. Naturally, we went on the 25-minute narrated train ride.

At Stingray Bay

These baboons were more well-behaved than coworkers I've known.

Hitching a camel ride

My first encounter with a collared peccary.

The Children's Museum of Phoenix

Children's museums rarely disappoint, but the kids had a particularly good time roaming around this one (55,000 square feet big). It's filled with hands-on activities and exhibits that sneak in learning, too, including an Art Studio, a Pit Stop where kids can race cars on three levels of racetracks, a Place For Under Threes (dedicated to toddlers), even a Book Loft. There's a cute cafe on the premises but for lunch we wandered over to The Corner Bakery Cafe, located a few blocks away in The Arizona Center.

I crawled through the entire Schuff-Perini climber with Sabrina; I had no idea my body could still hunch down like that. (In case you're wondering: Yes, Sabrina wore the same shirt for a good part of our vacation and who do you think I can call for a style intervention?)

Stones to draw on

The Noodle Forest

Max spent a lot of time in The Market (Dave gave him a price break at checkout). Meanwhile, Sabrina and I spotted the Pedal Power area on the second floor—basically a car wash (Max is still obsessed with them). "Tear Max away from fake shopping and get him to the fake car wash!" I texted Dave.

Max was in joy overdrive.

Out of Africa Wildlife Park, Camp Verde

I've never been on a safari, but this park—with hundreds of animals from around the world—seems like the next closest thing. Max loved the drive there, with its desert landscape; he thought we were in Radiator Springs from the Cars movies.

First we took the African Bush Safari bus tour

Yes, we were thisclose to Pilgrim the Giraffe

Max's favorite animal

The sable antelope are considered dangerous, because of their horns, so you wouldn't want to bring them to your spa treatment

The Wildlife Preserve has over 40 big cats including tigers, leopards, lions, mountain lines and jaguar. There are also grizzly bears, hyena, javelina and wolves.

This is how I feel a lot of days.

During The Tiger Splash show, tigers romp with caretakers, chase balloon creatures on sticks and jump into the pool. I asked one of the staffers there about the secret to befriending the animals. It's not about trust, he told me; it's about engaging with them as friends who play. Good life advice in general, eh?

The Giant Snake Show, where a group of lucky visitors got to hold Radiance the Python

Max made friends with her but, happily, did not want to take one home

Ever seen hyenas laughing? Me, either. Word, this does not mean they're happy—just excited, or feeling anxious or fearful.

Green Zebra Adventures tour of the Sonoran desert

One of the highlights of our trip: our two-hour exploration of the Fort McDowell Yavapai Reservation. The Green Zebra tour guide lead the way in his vehicle; Dave and I took turns driving driving a Tomcar, a high-performance military vehicle that absorbs shock amazingly well.

The Verde River runs through it!

At one point, we stopped at an overlook and hung out with two women from the Arizona Bald Eagle Management Program who were tracking a bald eagle couple and their new baby. FYI, the average nest is 3 feet wide by 5 feet long and 3 feet deep, and designed by Ikea (OK, not).

Max giggled the entire time we went over this rocky patch, thrill-seeker that he is.

WHERE WE ATE IN SCOTTSDALE/PHOENIX

Pinnacle Peak Patio, Scottsdale

This sprawling restaurant, more than 50 years old, serves mesquite-broiled steaks, chicken and baby back ribs with traditional cowboy fixings like corn on the cob, baked potatoes and Diet Pepsi.

Yes, those are ties hanging from the rafters. Pinnacle Peak Patio is emphatically casual and years ago, the owner cut off the tie of a patron. Ever since, anyone who shows up wearing a tie has it removed (I believe they use scissors, not a steak knife).

Afterward, the kids ran up and down the ramp to burn off calories. Or maybe just because it was fun.

SWB, A Southwest Bistro, at The Hyatt Regency Scottsdale

Years from now, we will be able to trace Max's guacamole addiction to this source. It's made tableside by the waitress (and your kids, most likely) and it's delicious, as is the Roasted Pear Salad, Vegetable and Bean Stew, and Pan Seared Maple Glazed Salmon served with Granny Smith Apple relish. We came back twice more for dinner, it was that good.

Bourbon Steak at the Fairmont Scottsdale Princess

We had a magical night at this steakhouse, and not just because Dave and I had a night to ourselves. The space is beautiful, with a contemporary interior with woody Southwest accents; the wine list, diverse, with interesting international selections; and the food, memorable. I'm just going to caution you to stop reading RIGHT NOW if you are at all hungry, as there is a good chance you might start nibbling on your computer screen.

The restaurant, headed by acclaimed chef Michael Mina, has no bread basket to tempt you—just fries, a starter served to all guests with three varieties (paprika-dusted, truffle and herb-seasoned) and dipping sauces (truffle ketchup, smoked-onion aioli and homemade ketchup). Made in duck fat, the fries are particularly tasty and dangerous, even more so than a sharp-horned antelope.

The view from the patio, where we sat. We started off with the Ahi Tuna Tartare with ancho chile, bosc pear and sesame oil, and the Avocado and Grapefruit Salad with smoked ricotta salata (I'm going to recreate this salad at home, the combo is really amazing).

The steak—made over seasoned wood-fueled flames—was amazingly tender and tasty and the sides (White Cheddar Hashbrowns, Michael's Truffled Mac & Cheese and Sauteed Broccolini) sinfully good. Again, apologies for making you hungry.

The Maine Lobster Pot Pie with truffled cream and seasonal veggies. Your server unearths the lobster from beneath the pastry and reassembles it on the plate.Voila! Dave said it was delicious (I'm not a lobster eater).

The restaurant is into deconstructed foods, like this carrot cake with cream-cheese icing and creme fraiche sorbet.

Other steakhouses are going to be downhill after our experience here. But we won't be getting to them because two weeks later I think I'm still full.

Los Sombreros Authentic Mexican Cafe & Cantina, Scottsdale

This restaurant has some of the best Mexican food I've ever had. It's gourmet, but not overly fancy—just super-fresh and exceptionally enjoyable. I had the Smoked Chicken Enchilada with salsa verde and chipotle crema; Dave had the Mahi-Mahi with Chirmol and is still raving about it. Sabrina was into the corn chowder and the hand-made tamales, one green corn and one black bean. And guess what Max had? Yep: two bowlfuls of guacamole.

T. Cook's at Royal Palms Resort and Spa, Phoenix

On our second kid-free night out, we headed to T Cook's. Originally a private mansion, the Royal Palms was built in 1929 and still feels very intimate.

We ate in the quiet, flower-filled patio that had a view of Camelback Mountain. It was a crisp night, and heaters kept us warm—so romantic. Kids? What kids?

We started with the Antipasto Platter with house-cured meats, pickled vegetables and Artisan cheeses. All of our food was beautifully presented.

A sumptuous piece of salmon

Chocolate Decadence. It felt like a shame to eat such a work of art but we got past that, fast.

If you're planning a visit to Scottsdale, you can get a free visitors guide at Experience Scottsdale or call 800-782-1117. If you'll be there in the summer, check out 100 Days, 100 Ways to Save, a list of discounted and free activities and restaurants.

And now, a parting gift: the recipe for the guacamole Max loves so much. One of the first things I did after we got home? Buy a mortar and a pestle.

Images: Sugar Bowl, Patricia Drury and dbz885; bald eagle, vai_boy

Disclosure: I received some discounted and complimentary meals, services and tickets, but the opinions expressed here are my own.

Why teachers abuse kids with special needs (and how to tell if something's up)

noreply@blogger.com (Ellen) — Thu, 26 Apr 2012 10:40:00 +0000

A boy with autism bullied and abused by teachers: The story's been zooming around the web this week. It's horrifying and, if you have a child with special needs, particularly gut-churning. I'll recap it for you:

Stuart Chaifetz is dad to Akian, a ten-year-old with autism who attended Horace Mann Elementary School in Cherry Hill, New Jersey. As Chaifetz recounted in a piece he put online and video he uploaded to YouTube, he started getting notes home from school that his son was acting violently. That confounded him; Akian, he's said, is a sweet-tempered kid. Finally, Chaifetz placed a digital recorder in Akian's pocket and sent him off to school. What he heard shocked him. "They were literally making my son's life a living hell," he says in the video. "They treated [the kids] as if they were sub-human."

You hear the aide berating Akian and saying "Shut your mouth" and a woman labeled the teacher saying to him, "Who are you talking to, nobody?" Once, after an outburst, he's told "Oh, Akian, you are a bastard." The tone of their voices is derogatory throughout.

Google around and you'll find a bunch of similarly outrageous incidents. Last month, a mom of a 10-year-old with cerebral palsy in Alabama also wired him up for school, suspicious of abuse. In the recording, Melisha Salinas heard an aide and teacher say disparaging things to her son such as, "You drooled on the paper, that's disgusting." In November, I wrote a post on Parents.com about verbal abuse from a teacher and aide caught on tape by an Ohio parent of a teen girl with disabilities. Amongst the comments made: "Are you that damn dumb?" and "No wonder you don't have friends."

Teachers who abuse kids with special needs are exceptionally repulsive—they're attacking children who are more defenseless than other kids and who may not be able to speak up for themselves. Who are these people? A few bad apples, I figured. But the question literally kept me up at night. So I got in touch with the American Psychological Association, and they connected me with John R. Lutzker, Ph.D., Director of the Center for Healthy Development and Professor of Public Health at Georgia State University in Atlanta. He's an expert on developmental disabilities and child maltreatment.

While Dr. Lutzker cautioned that parents shouldn't be alarmed that teacher abuse of kids with special needs is a trend, it seems that there are some modern-day realities that make it particularly key for us to be on our toes. (Not that you need to wire up your child tomorrow.) What he had to say:

What sort of person—a teacher, no less—could treat a child so disdainfully and abusively?

"People who abuse and neglect children are much more likely to have experienced abuse or neglect growing up, or witnessed it, or had parents with mental illness. People are resilient and survive but anyone who experiences those things is more likely to perpetrate child maltreatment."

Why would anyone go into the field of special ed if they were disdainful of children with special needs? In my own experience, besides having infinite patience, these people usually care deeply about the kids.

"While I can't interpret this situation, what I can say broad-scale is that education has become lower-valued and the resources may not be there. There is nowhere near the training there needs to be, both in terms of sensitivities, recognition and skills that all teachers—special needs or not—need. Aides are not all that well-trained, in fact, and are very poorly paid."

So you're saying that cutbacks in schools could have an effect on teacher's behavior? Not that it excuses calling a child a "bastard!"

"Certainly frustration about lack of education resources and anger in general and feeling incompetent could be a cause. No matter what the job, a person who isn't feeling successful because they don't have skills or resources is more prone to behaving unprofessionally. And these days, people don't have a filter. There's been a general lowering of social standards, and there is far more rudeness in general in society and fewer inhibitions to say whatever you want."

What's important for parents to keep in mind about keeping kids safe?

"Your child's school should have an open-door policy. Pay a surprise visit every now and then, but in the friendliest of ways! Go in to see how he's doing. It is a form of surveillance, but the fact of the matter is, school should be a place where parents are welcome—and professional standards are met. More resources for better training for teachers and aides would undoubtedly help a lot, but short of that it doesn't mean everything's hopeless. There needs to be an open relationship between the administration, parents and teachers."

What should parents be on the lookout for?

"You know your child far better than anyone else! In fact, there's some evidence that parents are better diagnosticians of developmental delays better than professionals like pediatricians. It's terrific these parents noted unusual behavior and did something about it. If your child is acting out, having more tantrums or behaving differently, pay attention. Kids will try every which way to communicate. The best advice for parents in general is let your gut be your guide."

Here's where you can sign Stuart Chaifetz's petition requesting that New Jersey officials fire teachers caught bullying kids.

Photo/Stuart Chaifetz

Special Needs Mom haiku!

noreply@blogger.com (Ellen) — Wed, 25 Apr 2012 10:40:00 +0000

Oh doomsaying doc

My child has much potential

Not in your med books

Mmmmm mmmmm mmmmm mmmmm mmmmm

Lips together, make that sound

Try, sweetie pie. Try.

IEP's coming

Will he get more therapies?

Curse you, budget cuts

Feeling so stressed out

By endless list of to-dos

Hi, Ben & Jerry

Please do not ask me

When he's "going to" do stuff

Think: his own timeline

OK, your turn—share your Special Needs Mom haiku here! You know the pattern: 17 syllables in lines of 5, 7, 5.

I'm telling you, they're amazingly zen to write.

Photo of Japanese cherry blossom by esteemed helga

What home improvement would make life easier?

noreply@blogger.com (Ellen) — Tue, 24 Apr 2012 10:40:00 +0000

Here's Max in the walk-in shower at the Hyatt Regency Scottsdale we were just at. For two days after we got there, Max wouldn't venture in there. He shrieked-cried when Dave finally dragged him in.

And then, it was love. The shower had a rainfall shower head and a hand-held hose. And you know what? If you spray a hand-held hose against the glass door, it looks just like a car wash. Yessssirreee.

Yet another vacation breakthrough! And the awesomeness didn't stop there. Max rinsed his own hair (a first). He reached that hose high above his head—holy gross-motor feat! Raising his arms like that isn't something Max's muscles usually want to do.

If we were able to get a walk-in shower in our bathroom (I think we'd have to get rid of our master bedroom to fit it but whatever), it would give Max more independence. Also: we'd save so much money on going through car washes to entertain Max.

I do believe Max would very much appreciate any one of these styles:

Source: bathroomremodelings.org via Krystal on Pinterest

Source: oliveaux.blogspot.com via Dina on Pinterest

Source: houzz.com via Nancy on Pinterest

Source: modwalls.com via Pascale on Pinterest

Oh, and while we were redoing the bathroom, we might as well toss in one just for me (so what if we'd have to give up the kids bedrooms):

Source: bhg.com via Pascale on Pinterest

I also fantasize about a home gym for Max that would have one of those cool swings physical therapists use and some balance beams and other equipment and oh, yes, a sauna. Purely for therapeutic purposes, of course.

So, what sort of home upgrade would make life easier on you and your family?

Did I mention I wouldn't mind a kitchen upgrade, either?

FYI, don't ever start scouring Pinterest for good-looking bathrooms because you will waste away entire evenings. Trust me on that one.

Building confidence in our kids through creativity

noreply@blogger.com (Ellen) — Mon, 23 Apr 2012 10:55:00 +0000

Ever heard of The Miracle Project? It's a nonprofit that enables kids and teens with autism and other special needs to express themselves through music, dance, acting, story-telling and writing. You've gotta love their motto: "ALL children of ALL abilities grow in school and in spirit while creating and performing in original musicals."

The organization is in need of more money for more programs. Happily, its expanding its theater and film arts program to San Diego and San Jose, thanks to a grant from CVS Caremark through their All Kids Can program. The free training will center around the principles of The Miracle Project's "7 Keys To Unlock Autism." (It's open to the public and happening between 4 and 7 Thursday afternoon at Pioneer Day School in San Diego so if you're in the area, stop by.)

Max on stage? Not so much. He's developed an interest in bands, as you may know from his recent barfly/groupie experience. But he's not quite ready to perform, even if Cars 2: The Musical was happening in his school (or even Chocolate Ice-Cream: The Musical, for that matter). Still, one thing he's very much into now is putting together his own books. We made a Cars 2 one the other day. He recently came home from school with one he'd made after his awesome teacher, Pat, read I'm Gonna Like Me! by Jamie Lee Curtis to the class. Each kid did a Top 10 Reasons Why I Like Me! booklet. Can you guess whose this is?

Max and I read it together, and he seemed very proud of himself.

That's one key to sparking our kids' creativity (and basically any kids' creativity): Encourage what they love to do. My parents were really good about that when I was a kid. I was pretty self-motivated and so I was the one suggesting piano lessons, ballet lessons, sewing lessons, learning how to do calligraphy. They always said yes. On Friday nights, they watched the mini plays my sister and I put on, and they regularly bought us craft kits. Once, Dad inexplicably brought home an accordion in the hopes I would play it. But, no.

That did not stop me from recently buying this mini accordion for Max, at the suggestion of one of his occupational therapists. He's played it a few times but he's kind of meh about it, a chip off the old block. On occasion, he likes to plunk out his own tunes on the piano.

Max is really into drawing; he's constantly going at it on the easel in the playroom. Always, in purple crayon. Mostly, scribbles. But they are awesome scribbles. He also likes to use Crayola's Color Studio HD app, which is great because the stylus is nice and chunky and easy to grasp. One of his favorite places for drawing? On the steamed-up bathroom window, after his bath. Sometimes I randomly leave the shower on hot for a few minutes so Max can draw. Come to think of it, I can't think of any artist who's used steam as a medium (watch out, Damien Hirst!).

As parents of kids with special needs, we have a lot to help them with—talking, walking, eating, social skills and other major stuff. But I think it's just as important to help them develop their creativity. Maybe they're not yet able to take pride in their steps or words, but most any child can be proud of something they create. And building up that confidence muscle will be a Very Good Thing to help them get along in this world.

What sort of ways have you found to encourage your child's creativity?

This is one of a series of posts sponsored by CVS Caremark All Kids Can, a commitment to helping children of all abilities be the best they can be. Like them on Facebook!

A bike giveaway, a great musical, discount toys and Other Stuff Worth Knowing About

noreply@blogger.com (Ellen) — Fri, 20 Apr 2012 10:40:00 +0000

Win an adapted bike for your child with special needs! The Friendship Circle, a nonprofit that offers social programs for kids with special needs (Max is a MAJOR fan), just kicked off The Great Bike Giveaway: Special Bikes For Special Kids. They've partnered adaptive bike companies to give away 18 adapted bikes. From now through May 10th, submit a photo of your child and up to 250 characters that describe why he or she could use an adaptive bike. From May 13 to May 18, share your submission with friends and family and encourage them to vote for you. The fourteen entrants with the most votes win; anyone who gets more than 100 votes will be entered to win one of four Directors' Choice prizes. Head on over to The Friendship Circle's Facebook page to read more info and to enter. Squeee!!!

Better play for kids with autism: This month Creative Kidstuff, a specialty toy store based in Minnesota, launched a section on its site geared toward kids with autism to help enhance their development (and fun). Created with a team of autism spectrum disorder experts, it features a curated collection of toys arranged by categories including "Social Engagement and Interaction" and "Cognition & Problem Solving." There are also informational videos and educational tips, too. Get 20 percent off your purchase from now until May 1 by entering the code Max20 at checkout.

A super-cool musical with a great message: A few weeks ago, my pals at MamaDrama invited me and Sabrina to see Freckleface The Musical. We'd never read the book, Freckleface Strawberry by the actress Julianne Moore, but it didn't matter because we got sucked right into the play. It's about a girl who decides she wants to get rid of her freckles because she can't stand looking different. The storyline, music and cast were completely entertaining (for kids and adults alike), and the message rocks: love yourself for who you are. Afterward I had a great discussion with Sabrina about her freckles and how Max's special needs are like his freckles. If you're planning to visit New York City, I highly recommend this show.

Win $500 for a fave school or charity (and Starbucks for you): In honor of National Volunteer Week (this week!) and Teacher Appreciation Week (starting May 7), VolunteerSpot is running a #DoGood Sweepstakes. Through April 29, they're giving away a Starbucks gift card each day. On April 30, one school or charity will score $500. Enter over on their Facebook page.

Be a wild thing: April 21 through April 29 is National Parks Week; parks across the country have free admission and special programs. Good incentive to tear our kids away from their computers and iPads and get out there! Especially this Sunday, which is Earth Day.

Want to be someone's secret admirer? From now until Mother's Day, May 20, nominate someone you want to surprise with a cute flower (like the above) at Hallmark's Blooming Expressions Secret Admirer. They'll randomly select one winner a day and mail them a flower, which comes with a code the recepient can entire online to find out who their admirer is. Hallmark sent me one and when I accidentally left Dave's birthday card at work, I gave him mine (NOBODY TELL DAVE).

Rock the vote: I've submitted the video I made, Would You Call My Child A Retard?, to BlogHer Voices of the Year. The more awareness I can raise, the better. You can vote here, and I'd appreciate it.

Freckleface photo/Carol Rosegg; Starbucks, nunun

Tootsie Pops, talent and a special needs reality check

noreply@blogger.com (Ellen) — Thu, 19 Apr 2012 10:39:00 +0000

Sabrina recently learned about Tootsie Pops in school. Her teacher sent an email explaining that she'd be using the lollipops to help kids understand what people see when they look at them. As she wrote,

"Everyone has something valuable inside that we might not see at first. The 'soft center' of people represents what we all have in common: feelings, hopes, dreams, fears, and insecurities. To feel safe and protected, people often use a hard outside to hide their soft core. However, a tough outer shell may prevent others from getting to know what is truly special about us. Making the effort to get to know what makes someone special on the inside helps us learn, grow and practice being good friends."

Hmmm, I thought. Interesting! And so creative.

Next thought: I wish Max could learn about stuff like that. As I hear about the social and life lessons Sabrina's picking up at school, I sometimes get wistful that Max isn't yet at that level of comprehension. If I tried to explain the imagery of hard on the outside/soft on the inside to him, it would go over his head.

That, I thought, was a Max issue. A cognitive delay. One of his things.

Then I had a little chat with Sabrina at bedtime.

"Sabrina," I asked, "what did you learn about Tootsie Pops today?"

"Oh! That they come in lots of colors!" she said.

[Silence.]

"I got the chocolate one!" she added, excitedly.

Um.

"OK, but what did you learn about how Tootsie Pops and people are alike?"

"That they look like a person because they have, like, a big head!" she said.

And that was all I could get out of her.

Clearly, Sabrina hadn't absorbed that lesson, and this is a child with no known cognitive delays. In fact, she's pretty bright. In fact, Max is pretty bright, too.

All kids learn at their own pace: I know that, I do. I'm also aware that it does me (and the kids) no good to compare the way they learn or the way the two of them do anything, although sometimes I just can't help myself.

It took a lollipop lesson to remind me.

Photo/lilfishstudios

Max is now a barfly and a groupie

noreply@blogger.com (Ellen) — Wed, 18 Apr 2012 10:38:00 +0000

We’re back from vacation in Scottsdale, and as soon as I sort through a billion more photos I’ll gladly share because we had a phenomenal time.

Here’s Max with a band that's a regular at the hotel where we stayed, the Hyatt Regency Scottsdale Resort and Spa at Gainey Ranch. Our first evening there, after dinner, we heard music coming from the lounge area and strolled in. Max immediately made a beeline for the elevator—he does not like loud sounds.

But then, he paused. He cautiously approached the stage. And he stayed there for a good hour, raptly listening to every song. It was his first concert.

The group, Spain Band, plays a mix of folksy covers like Joleen and I Am A Man Of Constant Sorrow, along with original songs. There are two sisters, Gretchen and Brooke Spain, and two guys on guitar including one named… Max! My Max was very psyched, because he is ego-centric that way.

In case you're wondering: Yes, I let Max hang out in lounges in his Cars 2 pajamas. He's like the new Hugh Hefner! Only with way cooler pj's, and minus the Playboy Bunnies.

The next morning, Max was doing a crazy dance in our room and pointing downstairs. He wanted to go back and hear the music. And so, we returned the next night Spain Band played. We sat on cushy sofas, ordered drinks (Max has developed a fondness for martinis!) (kid-ding!), chilled and listened.

By the end of our vacation, the Spain sisters were greeting him by name. “Hi, Max!” they said from the stage, and Max grinned the biggest grin. I half expected him to get up there and do a rousing rendition of his favorite song, “You Might Think I’m Crazy” (the version by Weezer, from Cars 2).

Before Max went to sleep last night, we surfed YouTube to find videos by the band.

This is just one of many reasons I think traveling is great for Max, whether we’re someplace an hour away by car or five hours by flight: It exposes him to new things. Because he's in a different mindset and feeling that spirt of adventure, he tends to be more open to new experiences.

Thank you, Spain Band, for the birth of a barfly. I'm not quite ready to do the club scene in New York with Max yet but, hey, I'm sure he wouldn't want his mom tagging along anyway.

How about you: Have you also found that your kids tend to act differently (for the better!) on vacation?

10 ways to encourage your child to talk

noreply@blogger.com (Ellen) — Tue, 17 Apr 2012 10:45:00 +0000

If you have a child who has challenges with speech, you're always up for a good tip... or trillion! I've got ten great ones here from Sherry Artemenko, a pediatric speech-language pathologist in Southport, CT who's the founder of Play On Words and the PAL Award (Play Advances Language). She's also a columnist for PediaStaff. Says Sherry, "These tips to encourage language development apply to children delayed in learning to communicate whether they are using gestures, sounds, words or an augmentative communication system such as PECS (Picture Exchange Communication System), PODD (Pragmatic Organisation Dynamic Display) or others. Our goal is for children to experience the joy of being independent communicators, and have a voice." A-men!

DO talk a lot to your child as you go through your day, describing your activities as well as his. Whether you’re playing at the park, grocery shopping, walking through a museum or making dinner, talk about what you see, feel, taste and experience. Children take in more language when it relates to what they are doing. For example, you could say "I'm getting out the big pot to fill it with water. Let's open the end of the pasta box and empty it!", demonstrating words like "open" and "end" as you speak to them. Multi-sensory experiences reinforce learning—seeing, describing, feeling, smelling the pasta.

DO pause when you talk and read to a child with speech and language delays. Many children need extra time to process the language, as well as formulate a reaction or response to what you are reading. I like to linger on a page of a picture book, commenting on the illustrations or what I might like about that part of the story, and then pause for the child to offer her thoughts.

DON’T talk for your child, whether he encounters a new peer or wants a drink of milk. You rob him of the joy of initiating communication. I see the demeanor of my kids change as they are able to make their needs known, if only by a sound, sign or picture but they are proud of their contribution to the conversation. Communication is inherently rewarding. You might have to clarify what he says, or fill in more language to the listener but let him engage.

DO choose toys thoughtfully that have open-ended play scenarios (lots of props for different story angles) and plenty of people, animals or characters to have conversations. A train set without people loses language learning potential since a person can drive the train, sell or collect tickets, pack his bag for the trip or greet Grandma at the station. Engage with your child and follow his lead in play, providing good language models as you participate as his conversational partner.

DON'T ask too many questions. You don't want to "test" your child by saying "What's this?" or "What's that?" Kids have to stop their train of thought, process the question, and then formulate an answer. Questions are fine when used naturally in a situation, such as "Do you want pancakes or cereal for breakfast?" I often tell parents to talk to your child the way you would like to be talked to. Does anyone like to be peppered with questions? I don’t!

DO be patient. Learning to communicate can take time. I took countless walks around the same block with a little 2 1/2-year-old boy, naming dirt, berries, dogs and water, until one day we were standing on our favorite bridge throwing rocks into the creek and he finally said his first word, “Rock!” His mother and I cheered. My only regret is that I didn’t jump in the water and retrieve that precious rock to commemorate the day.

DO praise attempts at communicating and repeat the correct model of what your child intended to communicate, such as “Yes! Want. You want some juice!” You are teaching your child the correct way to say a word as well as building vocabulary around that situation, expanding on what he is talking about.

DON'T ask abstract questions such as "What did you do in school today?" Instead, pull a paper or object out of your child's backpack and start discussing it. It's much easier for a child with speech or language delays to be prompted by a leaf, art project or picture and have the thought started for them to complete than to call up the events of the day and formulate them into sentences. Your child will feel successful, and so will you because you'll hear a little nugget about their day!

DO keep in step with your speech language pathologist and know exactly what to listen for and reinforce in your child’s speech. This is a dynamic process—we are doing diagnostic therapy, meaning we are trained to see every little step of progress your child makes and challenge her to move ahead. I have seen kids improve when I asked parents to give a “Great job!” or “Yes!” after a gesture, any vocalization or any vocalization other than the single sound their child typically used. What are the specific sounds, words or pictures your child is starting to master and should be praised at home? By the way, this keeps you in tune with your child’s progress too.

DO keep other caregivers, family members and teachers outside school informed of what your child is capable of saying, either verbally or through a communication device, so she receives plenty of practice and becomes confident in her ability to communicate. I often start with therapy in the homes of little ones who are delayed and just beginning to talk. As soon as they are able to produce a sound or syllable at will, I get permission to have some sessions in their preschool or daycare setting. I usually find that well-intended teachers are talking “for” the child and not requiring her to make her needs known. I demonstrate what the child can do and ask that they wait for some form of communication before giving her more snack, helping with a task, or giving her a toy.

Just remember, I only see your child a few hours a week; YOU are their first and primary teacher. Parents who partner with me and follow through at home see delightful progress because of their efforts. Go team!