Archive for the ‘ To The Max ’ Category

Can We Change The Way Society Thinks About Disability?

Thursday, August 14th, 2014

Yesterday, I read an article about a PhD candidate in New Zealand who will be looking into changing the way society thinks about disability. Titled “Reimagining Disability,” the research will explore disability pride and ableism (discrimination in favor of  ”able-bodied” people) through a group of intellectually disabled adults.

“Having a disability is largely viewed as having a problem, when it shouldn’t be,” says Ingrid Jones. “It’s just part of the diversity of humanity. The reason we have disability oppression is because society views disability as a problem. Being ‘able’ is seen as the norm, when society is more diverse than that.”

All I could think was, AMEN. 

To me, it didn’t matter that her research is taking place across the world, because the challenges people with disability face seem to be similar everywhere. It’s more intense in some places, of course; there are developing nations where children with special needs are kept hidden away in homes, and may be considered a “curse.” But the commonality all countries share, sadly, is that people with disabilities are often seen as defective, lesser human beings.

I know this firsthand from raising Max. He’s a super-cute kid (if I do say so myself), and a charming, happy one at that. Bright, too. But there have been many times in his life when people have expressed pity about him, because of his cerebral palsy. Or excluded him from programs. Or have only been able to see his disabilities, not his abilities (or possibilities).

Max’s biggest challenges aren’t the ones caused by his cerebral palsy—they’re the perceptions people have of him.

As disheartening as this can be, I have hope. Through blogging and social media, many parents are showing the world just how much our kids rock. We’re asking for people to respect our children, both in their language and in their attitudes. We’re pushing for inclusion, in school and out, as a growing number of programs and events crop up that offer the same. More and more nonprofits are spreading the good word, like AbilityPath and Easter Seals.Many states, along with the Supreme Court, have chosen to use the term “intellectual disability” in laws over the now defunct term “mental retardation.” Meanwhile, technology like speech apps are enabling our kids to better interact with the world.

It’s going to be a long haul. But research bit by bit, program by program, idea by idea, people can find ways to help society welcome and include those with disability. Person by person, parents can change minds, and help give our kids a better chance at being seen as equals in society.

It takes a village to raise a child, yes—but it also takes a village to cultivate respect for a child with special needs.

From my other blog:

Would you call my child a retard?

My kid with special needs understands you so don’t ask me, ask him

Max takes a walk I will never forget




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Tags: | Categories: Must Read, Special Needs, To The Max

A Billion Dollars To Benefit Autism

Monday, August 11th, 2014

On Friday, President Obama signed the Autism Collaboration, Accountability, Research, Education and Support Act into law (Autism CARES). It dedicates $1.3 billion over five years to various autism causes: $950 million is earmarked for research grants; $110 million will go to the U.S. Centers for Disease Control and Prevention to continue researching the prevalence of autism disorders; and $340 million will go to early detection, education and intervention.

The new law also tasks the government with examining and anticipating needs for teens who are aging out of school-based support and transiting into adulthood; a study will be commissioned to examine the improvement and cost-effectiveness of transition and adult services. The Autism CARES Act reauthorizes (and renames) the existing Combating Autism Act that has invested more than $1.7 billion in autism research, treatment, training and services.

Obviously, the new act is a big deal, and a Good Thing. I have a child with cerebral palsy, and wish there were funding like this for his condition. Still, I know many parents of kids with autism who believe money for treatment and services should be key—and dollars spent researching the causes, less so. They are weary of the constant stream of studies on the factors that contribute to autism. As one mom said, “What would I rather see instead of all this research focus on prevention? Help for those living with this right now!”

From my other blog:

My kid with special needs understands you

The boy who never was a toddler, until now

I don’t mean to hurt people with disabilities even though I call them stupid, people say


Image of outline of head via Shutterstock

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Tags: | Categories: Autism, To The Max

The Other Orlando: Good Family Fun

Thursday, August 7th, 2014

Orlando isn’t officially called The City of Fun, but it might as well be between Disney World, theme parks, water parks and other attractions. I recently got invited to check out the Orlando World Center Marriott, courtesy of the resort, and discovered a place with magic all its own.

The AAA four-diamond hotel, which recently underwent a multimillion-dollar renovation, is located a few minutes away from Disney by car, with a free shuttle service for resort guests (or rent a car at the Hertz desk off the lobby). The grounds are beautiful and scrupulously well kept, the staff is über-friendly and the service is great. With 2009 rooms the resort is large—it’s the biggest Marriott in the world—yet it never felt crowded during my stay. Rates start at $129, and vary by season. Ask for a room with a pool view.

A whole new world

What a room looks like before your family messes it up

The living room in a suite (also before your family messes it up); there’s a little kitchen, too.

Water stuff to do

The star attraction for kids: the pools, aka water fun central. The Falls Pool Oasis has a slide tower with two 200-foot winding flume slides and one 90-foot speed slide, exactly why it’s been named one of the 10 best water slides in the world. The only challenge: Getting your kids out of the pool. There’s live evening poolside entertainment Wednesday through Sunday, and family-friendly movies on Friday and Saturday nights on the Falls Pool Lawn.

The Falls Pool Oasis

The pool complex at night, when you will be forced to tell the kids that they have to return to the room because they can’t sleep in the pool.

The Splash Zone, a zero-entry pool

One word that comes to mind: “Wheeeeeeeeeee!”

Activities to do

Chances of rain during your stay: possible. Chances of your kids getting bored: ZERO. During the three days I was there, activities included a water balloon toss, noodle race, bucket and sponge race, Falls Pool scavenger hunt, jump rope competition, hula hoop competition, limbo competition, Aqua Zumba and Aqua Yoga. What they really need to add is an exercise class called Burn Off All The Amazing Food You Ate (more on that later). Kids can also enjoy character visits from SeaWorld and Legoland. I saw a cool interactive event with Gatorland in which kids got to hang out with a tarantula, a scorpion, a boa constrictor and a few little alligators. No word on what room rate they charge alligators. He he.

They did not get to take him home.

The Kids Activity Center, located in the center of the pool area. There’s scheduled face painting and arts and crafts, including seasonal ones like making Easter baskets.

Should your kids experience electronics withdrawal, hit The G.R.I.D. (Gaming Recreational Interactive Destination). They can use an Xbox, Playstation, Wii and iPads, and play classic games.

The video game arcade. “Hey, Mom! Could we maybe sleep here?”

A bunch of times throughout the year, the resort has fireworks.

The 200-acre resort is a playground for everyone, including anyone in your family who’s golf obsessed. Hawk’s Landing Golf Club is a par-71 course that’s a three-minute walk from the lobby. And if nobody in your family is into golf, they just might be after taking a lesson at the Bill Madonna Golf Academy. An affable and knowledgeable instructor, Madonna’s motto is “Expect to get better.” (He’s a GOLF magazine Top 100 Teacher in America.) Madonna and his team of pros teach the CHEF method for making a great shot: 1) Club down behind the ball; 2) Hands on the club, looking at your hands; 3) Eyes on the target; 4) Feet apart. They do not teach you what to do if your kids would like to repeatedly ride around the stunning course on the golf carts. The club offers specials, including kids under 15 playing free after 3:00 p.m. with an accompanying paying adult, so check on rates.

Group golf lesson

Be sure to give your family plenty of advance notice that you will be heading off to the spa. I got a hot stone massage that made me so relaxed, I dozed off. Clients can also get a body polish, mani pedi, facial or other skin and body treatment, and lounge in the spa pool, whirlpool and steam room. Sorry, you will not be able to sleep there.

Another word that comes to mind: “Ahhhhhhhh.”

One day, I headed out of the resort—and up, up and away thanks to Orlando Balloon Adventures. Although riding in a hot air balloon hadn’t been on my bucket list, I’d recommend adding it to yours because it’s an incredible experience. The suggested age is six and up; passengers need to be 48 inches tall, and not pregnant. Kids and adults in wheelchairs are welcome, too. In case you’re wondering (I sure was), the pilots are all certified by the Federal Aviation Administration, and the balloons get inspected after every 100 hours of flight time. They’re fueled by propane and yes, you see gigantic licks of flame coming out from above but you won’t feel them because of a metal heat protector.

Before our sunrise trip took off, the pilot released a white balloon into the air to see which way the wind was blowing. Then he consulted several websites, along with pilots from other local companies. Our group watched the hot air balloon inflate, then six of us clambered into the gigantic basket (there’s just no graceful way of doing it).

There have been lots of marriage proposals on the balloon. Weddings, too. No divorces, so far.

Takeoff was a breeze—you just drift on up into the air. The views were glorious, and floating around felt completely zen, almost dream-like. You just can’t believe that you are that high in the sky. There’s no real steering a hot-air balloon; the pilot can only climb or descend based on the direction of the wind current. Touchdown was pretty seamless, just a bump, and the trailer park people were pleasantly surprised to see us.

We flew for about an hour, going up 2947 feet—that’s over half a mile—and traveling 6.3 miles.

Rding in a hot air balloon makes you this happy.

Food to do

I was glad I packed my appetite, because the food at the hotel is stellar. Over at the Mikado Japanese Steakhouse, guests can order everything from sushi to steak, chicken , scallops, shrimp, salmon, scallops and lobster tails prepared on the hibachi. Dinner entrees come with soup (I loved the chicken Tori soup), salad, a shrimp starter, steamed or fried rice and Teppan yaki vegetables, each bite more delicious than the next. For traditional steak and seafood fare, there’s Hawk’s Landing Steakhouse & Grille.

Our table’s funny teppan-yaki chef; he didn’t just cook, he put on a show.

One look (and taste) and you get why Siro: Urban Italian Kitchen is award-winning. The modern rustic setting is both beautiful and warm, the kind that invites you to lounge, eat and enjoy. The pasta is hand-made and dishes are crafted with local in-season ingredients, with some charmingly served family style on wooden planks. Bartenders mix up Italian classics, including the Lemoncello Martini, complete with fresh-squeezed juices and herbs plucked from the mini garden out in back. You can just tell the kids you are drinking Mommy Juice.

Siro: Urban Italian Kitchen

Antipasto misto

Squash Blossom Piazza, with house-cured pancetta and goat cheese; apologies if you are getting very hungry right about now.

Alexia Gawlak, Siro’s cool chef. We got to go behind the scenes in the kitchen; large groups can book an interactive cooking experience.

We made cavatelli pasta, rolling the dough and cranking it out through a little pasta maker. Alexia cooked it up with crab, tarragon and blistered tomatoes in a lemon parmesan broth.

Solaris, open for breakfast and lunch, has a Good Start breakfast buffet with more than 80 items including an omelette station and Belgian waffles (with Nutella handy), plus a really great spread of fresh fruit to help alleviate your guilt from eating all the waffles and Nutella. Kids under 12 eat free, one per paying adult. Also nice to know: For every buffet sold, Marriott donates a dollar to Children’s Miracle Network Hospitals.

Decisions, decisions

If you want to grab a quick bite, there’s always the Food Court.

No matter where you eat, leave room for dessert, because the Marriott’s pastry chefs are out of control. We sampled everything from decadent truffles to mini meringues to macarons. And then we sampled some more.

This is what dessert heaven looks like.

Y-U-M spells Oh, I think I will just have one more

There will be just one last challenge facing you: Your family is going to be very sad when it’s time to go home.


Thanks to Orlando World Center Marriott for providing transportation, accommodations, dining and experiences. All opinions (and bliss and weight gain) are my own.

Disney's Magic Kingdom: Beyond the Rides
Disney's Magic Kingdom: Beyond the Rides
Disney's Magic Kingdom: Beyond the Rides

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This Is The Way Inclusion Should Be

Tuesday, August 5th, 2014

Yesterday I was flipping through the September issue of Parents magazine, and landed on an article about finding a good preschool for toddlers. My kids are in grade school, but I was thrilled to come upon it. That’s because it has a photo of an adorable little redhead with Down syndrome.

Parents magazine has been featuring photos of children with special needs in their pages for the last few years, and I don’t just mean in articles about kids with special needs. Kids with disabilities model for parenting stories, same as so-called typical kids do. I’ve been writing for the site for the same amount of time, and never once has Parents asked me to call attention to this. Two weeks ago I had lunch with the editor, Dana Points; we talked about our kids, magazines, summer plans. She knows how passionate I am about inclusion but still, she didn’t bring up the cutie pie on page 120.

Parents magazine is featuring kids with special needs in its pages as they should be: matter-of-factly. Organically. Naturally. Like it’s no big deal.

Of course, photos of kids and adults with special needs remain uncommon in the media, so it’s still major to see them in ads or in the pages of magazines—let alone on the cover, as Parents did with their April issue (which featured a brother and sister with autism) and, in February 2013 (which showed a three-year-old with spina bifida). If a company wants to call attention to the fact that they’ve featured a child with special needs, that’s perfectly cool; the more awareness raised, the better. The more people see our children included in mainstream, the better.

Parents like me often face major uphill battles with inclusion, particularly with getting our kids involved involved in programs or extracurricular activities. That’s because people sometimes don’t understand that children with special needs are still children. They may have more visible challenges than others, they may require certain accommodations to level the playing field, but just like their peers they want to play, engage, learn, enjoy. They want to belong.

I speak for many parents of kids with special needs when I say that one of our greatest hopes is for people to accept our children, and the adults they will someday be. That starts with inclusion. Opening up the pages of a magazine and seeing children like our own doesn’t just do our hearts good—it’s one more step toward making the world a more welcoming place for our kids.

From my other blog:

8 ways to include kids with special needs in programs, events, classes, camps, wherever 

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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Top 20 Favorite Summer Pleasures

Friday, August 1st, 2014

With the arrival of August, I’m realizing I have about one month left of real summer—and I’m squeezing in as much as I can. For me, it’s not about vacation; there’s only so much time I can take off work, after all. It’s about the season’s small, everyday pleasures. My favorites:

 Watching fireflies. Magical no matter how many times you see them.

Water balloon wars with the kids.

• Riding down a highway with the sunroof open and Springsteen blasting [or insert music of your choice].

Watching the kids eating ice-cream cones. Actually, watching any kids eating ice-cream cones.

 Slipping into a crisp white t-shirt and navy shorts or pants. This combo always makes me feel like I’m about to jump onto a yacht.

A glass of iced tea with lemon. Sweet, please. Sitting at the kitchen table with some magazines and nobody in the house but me, please.

• Feeling all cozy under the sheets on a hot night, with the a.c. on full blast.

 Not having to dress the kids in a million layers before they go outside. It’s been about five months since winter and I’m still appreciating that.

• That shower you take after you’ve been at the beach all day.

 A favorite pair of sandals. Mine: an ancient pair of tan Birkenstocks that my husband thinks are the world’s least sexy shoes. Could be, but OMG, they’re comfy.

Hydrangeas in bloom. We only got one this year—that cold streak did a number on the bushes—but it was one beautiful bloom.

Picking blueberries or strawberries with the kids, then making jam or dessert.

 Ten perfectly polished pink toes.

 A Sunday afternoon barbecue with friends.

 Reading under the stars. Our family recently did this for the first time, and everyone loved it. Just grab the kids, a blanket, books, snacks and flashlights, head out at dusk, enjoy.

Fresh fruit salad. Made by you and the kids with a melon ball scooper, one of those no-tech gadgets that’s always fun.

Boardwalks. Any kind, anyplace.

The scent of just-cut grass.

Date night with your partner at an outdoor cafe.

Watching your kids enjoy rides at the fair, carnival, amusement park or wherever there are rides to be had.

From my other blog: 

A reading under the stars party

Let It Go, like you’ve never heard it sung

What I think when I watch my kids sleep


Image of child eating ice-cream via Shutterstock. Other photos, Flickr. Iced tea: Cheryl Vanstane; hydrangea: Chris Gladis; fruit basket: debbilytle

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Tags: | Categories: Must Read, To The Max