Thursday, January 31, 2013

The 26Valentines Project: For The Sandy Hook Elementary School 26


Update: We have decided to not move forward with The 26Valentines Project. While this well-intentioned effort will be no more, we know we'll all continue to honor the children and adults in our own ways.

The day after the shootings in Newtown, Robbie Parker spoke at a press conference. His six-year-old, Emilie, was one of the children who died at Sandy Hook Elementary School in Newtown, Connecticut. He spoke of how many lives Emilie had touched, how bright, creative and loving she was, how infectious her laugh, how she never missed an opportunity to draw a picture or make a card for someone.

I didn't know how he managed to stay composed, but I knew he was standing there in part because he wanted the world to remember Emilie. I ached to do something to help. A couple of weeks later, I heard from my friend Heather at The Extraordinary Ordinary. She wanted to find a way to commemorate those twenty children and six adults, too. That morphed into this, 26Valentines.

Much love has poured in for these children and adults from around the world, their faces engraved
on our hearts. As parents and as bloggers, we wanted to perpetuate that love with a month of tributes throughout February. Twenty-six valentines that say we are still thinking of them and what was special about them, and we will always remember.

Wednesday, January 30, 2013

Cool art that shows why the word retard is uncool


The Social Security Administration intends to stop using the term "mental retardation" in its listings and rules. That announcement came on the heels of Baltimore Raven's quarterback Joe Flacco's remark that a cold-climate superbowl is "retarded." He immediately corrected himself, saying "I probably shouldn't say that. I think it's stupid." The next day, he issued a formal apology for his "bad choice of words."

This from a man who has a relationship with the local Special Olympics, including hosting an annual fundraiser. Clearly the remark was a slip of the tongue, an old habit that died hard. On the upside, hearing a major quarterback apologize might help raise awareness among kids and teens. The more key thing is that he and other people in the public eye do what they can to help people—and particularly young adults—understand how to respect those with intellectual disability. (Hey, Lady Gaga: r-word song, please?) School programs that raise awareness and inclusionary activities would make a real difference, too.

Cool artwork is another proactive ways to spread messages, and I've found some great stuff out there. The above is the first part of a graphic novel about why the word "retard" hurts. Created by Camila Trespalcios Laguette, a student at University of El Paso Texas who coaches basketball for the Special Olympics, it's her final project for a comics class. Check out the full version on her Facebook page—log in first, then click from pages 1 to 11. 

Also recently discovered, on Flickr: this collage by one J. Mendelsohn, titled "Disable the Label." 


Then there's this popular poster (and a t-shirt, too) by graphic artist Alison Rowan:


And this badge from the r-word campaign:


And this Bart Simpson reminder:


I love how artists are using their creative powers for good.

Tuesday, January 29, 2013

Special needs mom guilt (and not going there)


I let the kids watch TV for hours on Sunday mornings so I can have time to myself. This actually does not give me guilt, as I mentioned in Mom Fails Women Refuse To Feel Guilty About. I deserve me time. I need me time. Desperately.

As parents of kids with special needs, we juggle a whole lot. That means there's a lot of stuff that we could be doing at any given moment, and a lot of stuff that we could feel guilty about for not doing...if we let ourselves go there.

Sure, guilt strikes at times. Like when I don't get around to programming Max's iPad with new words, say, or I leave the house without a bib for him and his shirt gets sopping wet. At times, I get a stab of I'm-not-doing-enough-for-him guilt. And I definitely felt bad about sending him to picture day in a crappy t-shirt, though that had a happy ending.

Rationally, I know that I can't meet Max's needs 24/7 or do every single thing the therapists recommend. That it is not possible to always be on top of Max's physical demands, even if it means he's outgrowing his foot braces and I have yet to get a new prescription (true story). I can't have eternal patience for his quirks, because listening to YouTube videos of Disney Cruise ships blowing their horns is slowly but surely driving me insane. (Note to self: Could it be a government conspiracy?)

This is because I am far from perfect. But as we well know, perfection is overrated. I generally think I'm doing a good job, or at least an OK job. And sometimes, OK is enough.

How about you: What do you refuse to feel guilty about as a mom?

Monday, January 28, 2013

Happy birthday, beautiful girl


I don't think I've ever shared Sabrina's birth story. Here it is, in honor of her eighth birthday. There were minor bumps, but mostly it all seemed miraculous.

For my second pregnancy, I went to a high-risk practice. Dave and I weren't taking any chances; doctors still weren't sure why Max had a stroke at birth. They had discovered that Ma and I had two mutations that made me more prone to clotting—prothrombin 20210A and MTHFR—but having those alone do not cause stroke, there has to be some sort of trigger, like lack of oxygen.

My doctor put me on blood thinner, heparin, as a precaution and I had to give myself a daily shot. I usually injected my hip but I wasn't very good at it because I'd end up with black and blue marks everywhere that literally made the doctor laugh. I would not make a good junkie.

We knew we were having a girl; we'd decided we were going to do everything different than we'd done with Max. Superstitious, we were. Actually, there was a little confusion about whether she was a she. At my first sonogram, I was told we were having a boy. Dave was thrilled. Then I went for another sonogram (one perk, or perhaps the only one, of being high risk is you get lots of sonograms.). "I'm psyched to have another boy—at least I have all the clothes!" I joked to the technician. A minute later she said, "I wouldn't be so sure you're having a boy."

Me: "WHAT?!"

Technician: "You're having a girl!"

Me: "Are you sure?!"

Technician: "I don't know what they saw the last time, but it's definitely a girl!"

I called Dave right away.

Me: "You're not going to believe this...."

Dave: "We're having twins!!!"

Me: "Um, nope. We're actually having a girl, not a boy."

Dave: "WHAT?!"

And a girl, it was. As with Max, I had a nice pregnancy—no nausea, plenty of energy. Friends asked if I was nervous. No, I wasn't. I felt I was in good hands with the doctors. I knew what had happened to Max wasn't that common. I also just wouldn't let my mind go there. Dave was OK—he's generally pretty laid back—but he'd get a little commando about certain things. We both love sushi and he refused to take me to any sushi restaurant, even if I just had veggie stuff. "What if the knife touched fish?" he'd say. He didn't want me to buy baby clothes ahead of time. Sometimes, he'd put his head on my belly and just listen, as if he were checking to make sure she was OK.

Max and Sabrina are 25 months apart. Max was progressing slowly but surely throughout my pregnancy, moving from commando crawling to zooming around on all fours (he started walking independently at three). As my belly grew, so did Max's understanding. He got that there was a baby in there. He liked to pat it and watch it ripple.

Choosing names wasn't hard. We decided to name the baby after my beloved Uncle Sidney. Dave was thinking Sophie, but then I pointed out that three kids in our neighborhood were already named Sophie. We both loved her middle name, Willa, in honor of Dave's grandfather William. For a while, we considered making Willa her first name.

I was having a planned C-section at week 40. The morning of the scheduled operation, it was snowy outside. As with Max, it had been a super-snowy winter, the kind we don't really have anymore. Max and our babysitter waved goodbye as I waddled to the car. I was excited, and just a little nervous.

We hit traffic en route to the hospital and missed our C-section appointment.

Missing your C-section time isn't something I'd recommend, because what happens is that all the emergency C-sections go ahead of you. That makes sense, but I happened to be there on a day with a LOT of emergency C-sections. The hours crept by. We'd arrived around 10 a.m.. By 4:00, I was freaking out. The anxiety I hadn't had during my pregnancy hit, hard. I kept having flashbacks to Max's birth, when everything had seemed OK only we later found out it so wasn't.

"I am leaving if they don't take me in soon!" I announced to Dave, which made no sense whatsoever. (Where was I going to go?!) He wisely counseled me to stay. The only thing that calmed me down was rambling the hallway with my IV pole. I threatened to leave a couple more times after that. Poor Dave.

I finally went into the delivery room at around 10:30 p.m. There was a big team there, including two doctors from the practice. They knew Max's history, and they weren't taking any chances.

During Max's C-section, I started shuddering because I felt cold, but that was it as far as discomfort.
This time around, though, I felt a lot of prodding that made me nauseous. "STOP!" I kept telling the doctors (yes, I was quite the charming patient). That's when they knocked me out.

When I woke up Dave was holding Sabrina, 7.6 pounds of pink perfection. She had the most wise-looking little face. "Look at how long her fingernails are!" Dave marveled, and they were.

I was in the hospital for four days. Dave brought Max to visit (my mother and sister were watching him). He sat in bed with me and stared at Sabrina; I think he thought she was a toy. Max gave me a ton of kisses, to make sure I remembered I was still his mom.

On my second night in the hospital, I thought Sabrina was breathing too rapidly. I paged a nurse. She came in, looked at Sabrina, said she was fine and left. I asked to speak with the head nurse. Tearfully, I told her what had happened with Max, and that they should not assume anything was OK. After that, the doctor on call came to check out Sabrina. He said she was fine, and explained that it was normal for infants to breathe irregularly at times.

I literally wasn't convinced Sabrina was fine until we walked out of the hospital with her; I needed to get past those first few post-birth days, the time when we had realized Max had a stroke.

When the day came to leave, I couldn't check out until the doctor had looked at my C-section stitches. Bad news; the wound wasn't closing up. An intern had removed the stitches too early, and a visiting nurse would have to come to the house for the next few weeks to clean and re-pack the wound. A minor inconvenience, and a small price to pay for having Sabrina. I wasn't fazed. A little grossed out, yeah.

Dave picked up an adorable little pink car seat sack for Sabrina's homecoming. I remember zipping her into it and not quite believing I was able to leave the hospital with her just like that. A staffer wheeled me to the lobby, Sabrina in my arms. Dave was out front, waiting in the car. And then, like any other parents, we clicked in the car seat and drove away.

We had a beautiful new baby, a healthy baby. Eight years later, I still don't take that for granted.

Friday, January 25, 2013

Special Needs Blogger Weekend Link-Up: You rock!


I am sure you have something great to post this week. I just have a feeling.

The idea

Share a favorite post of the week.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: How Come Birthdays Only Happen Once A Year?

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

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

Happy linking!

Thursday, January 24, 2013

An iPad giveaway for kids with special needs


I'm glad to announce a new iPad giveaway for kids with special needs. This one started with another mom to a kid with special powers. Shannon Henrici is a blogger friend I've known for a couple of years; she's feisty, smart, fun and mom to the adorable Lily, who has tuberous sclerosis. "Lily loves her iPad, so I know how helpful they are for kids with special needs," says Shannon. "We had to find a refurbished one for Lily because of the expense."

Shannon is on staff with a business that does work for Bob Knows Phones, an Atlanta-based company that repairs iPhones, iPads, tablets, and even mp3 players. You print and fill out a form and ship them your gizmo-on-the-blink. They'll let you know what the fee is, you OK it and they fix it within 24 hours and send it back (there's a $10 delivery fee).

The owner has two grown kids who had some developmental issues as children, and understands the power of iPads for our kids. And so, he generously purchased a mint-condition refurbished one from Apple to give away. This one, which Shannon has in her possession:


It is an iPad 2 with Wi-Fi + 3G 16GB in white, valued at $399 (originally released March 2011). It has a 9.7 inch widescreen display, multi-touch screen, FaceTime with two cameras, Dual Core A5 chip and Bluetooth 2.1; it weighs 1.35 pounds and is .34 inches thick. It comes with the Apple guarantee, in the original box, complete with serial number.

HOW TO ENTER

Use this form, which includes an area to privately enter your email address. (If you're using Safari as a browser and it acts wonky, try entering via Firefox.)

ENTRY RULES

1 entry per family, please.
• If there is no email accompanying your entry, it is disqualified.
• No entries accepted past the deadline.

• The winner will be asked to provide a letter of need from a speech therapist or doctor in their child's life. The letter from the therapist or doctor must include his/her qualifications and contact information so that he or she can be called to verify that, indeed, the recipient is a child who will benefit from an iPad and speech app.
• This giveaway is open until Thursday, January 31, 2013 at 11:59 ET. It is open to U.S. and Canadian residents 18 and older.  

WINNER DETERMINATION

• I will choose the winner via random selection at wildfireapp.com within 24 hours after the giveaway is closed, and this post will be updated to include screenshots from random.org of the winning comment. I will email the winner at that time.
• If I do not hear back from the winner within five days, another winner will be chosen.
• If a winner does not produce a letter from their child's speech therapist or doctor within two weeks of being informed of the win, another winner will be selected.
• Once I confirm information with the child's therapist or doctor, the iPad 2 will be mailed out.

FYI, Bob Knows Phones is also hosting a giveaway for a 16GB iPad mini, it's here and ends March 7, 2013. Thanks again to the company for hosting this giveaway!

FYI, the IRS requires that you report winnings from sweepstakes.

Good luck!

Update: The winner is...


Wednesday, January 23, 2013

Proud to be a special needs warrior mom


This week, I'm once again doing battle with the insurance company over paying for Max's speech and occupational therapy. They're not reimbursing us and damned if I'm not going to keep pressing them on it.

This week, my friend Kate and her son with special needs are visiting a world-renowned specialist; the guy has a year-long waiting list but Kate talked her way in there.

This week, I learned about a mom in Maryland who is fighting to get her child with learning disabilities placed in a classroom that's more appropriate for him.

This is what we do as moms of kids with special needs: nudge, push, plead, persist, cajole, persuade, convince, argue, and, on occasion, have a total hissy fit to get our kids the therapies, equipment, services and whatever help they need.

And we manage to do all that and look like Beyoncé! Or some days, like the chick above, but mostly like Beyoncé.

We may get weary (wow, do we get weary), but no matter what we will make another call and send another email and write another letter and file another complaint and sweet-talk the person booking appointments and demand another meeting and find an advocate or attorney, if need be. We learn the lingo, trust our instincts, stick to our guns, and at times bluff our way through. There is nothing—nothing—we will not do for our kids.

Because we want our kids to have every possible chance to strengthen their bodies and minds and overcome their challenges.

Because we want to get them every single resource that is available, and then some—we are greedy that way.

Because we want, more than we've ever wanted anything in life, to enable our children and help them thrive.

Because if we don't, who will?

It's kind of mind-boggling what we pull off, and if we think too hard about it we might never again emerge from beneath the bed sheets, so it's best not to ponder and just power through.

We are special needs warrior moms, and we are proud. Because when we look at the progress our kids make, and how far they have come, we know it's all worth it.


Image: istock/Ershova Veronica

Tuesday, January 22, 2013

Max is talking and thinking in sentences: holy progress!


I love words, always have. As a kid, I made up crossword puzzles and borrowed about ten books a week from the library. In college, I wrote for the newspaper and actually enjoyed writing papers (taking tests, not so much). In my adult life, I've made a living off working with words as a magazine editor and have found bliss in blogging.

You might think that Max's struggles with words would get to me, but they don't. I am grateful for the iPad and speech app, happy that he can articulate some words, and thrilled that lately he's been talking more and more. It's hard to understand just what he's saying sometimes, but he is trying so hard. His speech therapists have noticed; the one at school emailed to say she's hearing him talk a lot, combining different sounds. "His approximations have increased and improved," she wrote, a seriously beautiful sentence.

At bath time, Max likes to have chats with himself after I've washed him, shower curtain closed. I perch on the toilet seat and listen to him animatedly babbling away, his pitch rising and falling. It's all good practice, a way to play with sound and speech. The babbling was something I ached to hear when he was a toddler and now that he is doing it, I am in awe.

I get particularly excited when Max does something new with words, which is what happened last night. We were hanging out in his bed, as Sabrina read in her room and listened to a Katy Perry CD because she aspires to be a teenager. Max was telling me he wanted me to buy him a Lightning McQueen bed, and I've been deflecting him on that because he has a perfectly good bed and I've been trying to contain the Cars 2 obsession (mostly unsuccessfully).

Suddenly, Max pointed to something on his dresser. Then he pointed to his bed, his whole face lit up, he waved his arms and he said something. I had no clue what he was telling me. Again, he pointed to his dresser, said "onney," pointed to the bed, waved his arms again and said "uh-ize!"

Then it dawned on me: Max was pointing to his (Lightning McQueen) wallet and telling me I should use the money in it to buy him a Lightning McQueen bed, and then surprise him with it.

I squealed, I was so excited. This was a complex sentence and thought, too: He understood the concept of money, and he knew he wanted a surprise. And he was up for spending his own money, not mine! What a thoughtful kid!

As is often the case when Max does something awesome, I immediately covered him with kisses. It will be all kinds of embarrassing when I do that and he is, like, 45 years old. But he's only 10 and he's making true progress in one of the areas he's very challenged in. And I am loving it.

Monday, January 21, 2013

A waiter stands up for a kid with Down syndrome: props!


In a perfect world, people wouldn't stoop so low as to mock or deride kids with special needs. Not going to happen, because there's no vaccination for ignorance (even then, it would probably only be 67 percent effective). So in a less perfect world, aka the real one, people would at least stand up for our kids when others demean them. That's what happened last week at a Houston restaurant, where a waiter defended this cutie pie with Down syndrome.

Milo Castillo, 5, and his family are regulars at Laurenzo's restaurant; Michael Garcia is a waiter there who usually carries Milo to his table when he arrives. Last Wednesday, according to Garcia, a diner moved his family away from Milo's and made the comment, "Special needs children need to be special somewhere else."

Garcia refused to serve him and when the man said he was leaving Garcia responded, "How could you say that about a beautiful 5-year-old angel?"

Our hero

Happily, the restaurant stood behind him.

This is awesome, though it's so disturbing to read about people this close-minded. Obviously, I have no objectivity whatsoever but I do know that even if I didn't have Max, I would still have a hard time understanding what could compel someone to be so clueless. For shame. I hope that guy is watching all the news on this and squirming his ass off.

If I'd been next to this guy at the restaurant, I would have asked to move to a different table. Ignorant people need to be ignorant somewhere else.

Props, Michael Garcia and Laurenzo's. You've made a difference in this one family's life, and inspired many, many others.

Images: screen grabs, Click 2 Houston

Friday, January 18, 2013

Special Needs Blogger Weekend Link-Up: Why, hello there!


Come on in! The crowd's nice, the coffee's brewing. It's a weekend link-up for bloggers with kids who have special needs.

The idea

Share a favorite post of the week.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I'm Becoming A Real Chick Magnet

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

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

Happy linking!

Thursday, January 17, 2013

A boy with cerebral palsy is a sports star of the year—and his brother, too


Sports Illustrated Kids has declared not one but two kids to be SportsKid of The Year, featuring them on their December issue. Actually, they're brothers. Actually, one of them has hypertonic cerebral palsy and can't walk. Actually, they enter triathlons together and one brother tows the other on a bike, pulls him in a raft and pushes him in a trailer.


You may already know of Cayden Long, 7, and Conner Long, 9, of White House, Tennessee, since the two have been making headlines since they started participating in triathlons a year and a half ago. They go by the name Team Long Brothers, and they've been traveling the East Coast to compete in races.

I love that Cayden gets to participate in triathlons, and I am seriously inspired by Conner's extreme devotion and ingenuity. I hope that kids who see this understand that there are all sorts of ways to include kids with disabilities in activities, and that sometimes you just have to think outside the...bike.

I only recently heard about the SportsKids honor. I shared this video on Facebook, and wanted to make sure all of you here saw it, too. Enjoy. Pass the tissues.

Wednesday, January 16, 2013

What words describe your child with special needs?


This snowflake is a cool project from Max's class, geared toward helping kids learn about adjectives. The other students came up with words that describe Max, and then he glued on icons of those words. The kids were definitely on target!

Other words I'd use to describe Max:

• Cheerful
• Handsome
• Determined
• Bright
• Smart
• Cute
• Sweet
• Smiley
• Easygoing
• Curious
• Alert
• Friendly
• Impish
• Silly
• Resilient
• Caring
• Loving
• Cuddly
• Delicious

I love when teacher or doctors write up reports using any of the above descriptions. It's funny, sometimes on medical write-ups doctors will note "Max is a handsome boy" as if that has anything to do with his cerebral palsy but, hey, I'll take it.

Sabrina is...

• Feisty
• Pretty
• Freckly
• Happy
• Smart
• Sharp
• Funny
• Cute
• Sociable
• Pensive
• Determined
• Diligent
• Curious
• Observant
• Stubborn
• Sensitive
• Delicious

So, what words would you use to describe your child with special needs?

Tuesday, January 15, 2013

On transitioning a teen with special needs into adulthood


This guest post is from the awe-inspiring Laverne Bissky, mom to Kasenya, who has cerebral palsy. Laverne is an inspirational speaker, writer and coach who writes at No Ordinary Journey. Along with  her husband, son and Kasenya, the family has backpacked in North America, Australia, South East Asia, Africa, Europe and South America. She recently created a cookbook that benefits programs the couple run for kids with special needs in Vietnam. 


The transition from the old year to the new is a good time for reflection. As parents we usher our children through many transitions but as parents of a child with a disability trepidation is often part of that process. Perhaps the scariest is the transition to adulthood which will happen soon for us since my daughter will be turning 18 in 2013. As I reflect on that, I realize that whether we thought of it this way or not our preparation started from the day Kasenya was born.

If new parents of a child with a disability asked me to name the most useful thing we have done so far I would say “have a vision and follow your passions!”. OK, I guess that’s two.“We don’t know how severe the disability will be” they might protest. And in the beginning that is often true, so your vision should be broad. When Kasenya was diagnosed with Cerebral Palsy (CP), I vowed that on my deathbed, people would say that disability never held our family back. But at the time, I had no idea what kind of commitment that would take.

Over time, following your passions helps to shape and give life to that vision. My husband, David, and I shared a mutual passion for travel. So when Kasenya was 4 and her brother Devin was 6 we decided to travel to Australia. I knew that if we were going to travel with our children we needed to start when they were young. By then it was evident that Kasenya would need a wheelchair for mobility and I knew if we waited until she was older travel would be daunting. Australia was a clean and safe place to try out travel and for part of the time we were visiting relatives which made it easier.

We loved Australia so much that we went a second time and our kids caught the travel bug too. On that trip Devin decided that his goal in life was to visit all 7 continents—while his parents were still paying for it! This gave us something measurable to shoot for. My husband, David and I decided we would go until we could go no more—when our money, time or physical strength ran out.

Kasenya and I hold a baby at Saigon Children's Hospital

Last summer we travelled to our sixth continents, with only Antarctica left. (You can read more about our travels at No Ordinary Journey). Following our passion for travel and combining it with volunteer work, we discovered a unique opportunity: working with children with disabilities and their families in the less developed world. And this July we will travel to Vietnam to do a project there. So what does this have to do with transition?

The transition to adulthood involves many decisions. Decisions need to be made about guardianship and applications made for funding so that Kasenya can continue to have the services that she needs. Later we will need to think about where she will live as an adult. The least urgent but most important questions is what she do with her time once she is no longer in school. I have always hoped that as an adult she would be as independent as possible and I knew in my heart that she would contribute something positive to the world, but given the severity of her CP what would that be? That question is beginning to answer itself.

Kasenya will undoubtedly play a big part in our overseas volunteer work. We have already seen the impact that her mere presence can have in changing attitudes toward people disabilities in Africa, Asia and South America.

Kasenya visits the Kampala School for the Physically Handicapped in Uganda

When we visited Vietnam the first time we were invited to meet with a group of parents who have children with CP at the hospital in Saigon. I asked our interpreter why many of them cried when they met us. She said that in Vietnam there is still a stigma to having a child with a disability. Because of our open and inclusive attitude toward Kasenya we had not only brought these families education but also dignity.

The fact that Kasenya’s disability is so severe and so obvious makes her an exceptional advocate especially in the parts of the world where children and adults like her have no voice. She is coming to see herself as an advocate and many possibilities are beginning to emerge for her future in advocacy at home and abroad.

In the beginning, vowing to not let disability hold us back was simply a way of clinging to hope. But a full and deep commitment this vision has helped us navigate through a series of transitions; to see that disability is not our whole life (or our child’s); and undoubtedly has given our child a brighter future.

Following our passions has helped both of our children see that anything is possible. With no limits, Kasenya recently announced that she would like to go to Australia for 6 months when she’s finished high school.

I believe that we can live an exceptional life not in spite of the fact that our child has a disability but because of it. Parenting a child with a disability bestows special gifts. 

In my upcoming book Exceptional Parent—Exceptional Life I share the joys and challenges of our family’s journey. Visit the book site to download the first chapter, free!  

Monday, January 14, 2013

What do you most remember about your wedding?



Dave and I recently went to an event that had a photo booth. It's rare to get shots of the two of us; mostly I'm taking photos of the kids, so I'll be saving these for posterity. I think our lives would be entirely changed if we walked around in humongous rose-colored glasses.

Today's our twelfth wedding anniversary. We are celebrating by doing overdue loads of laundry in the morning (me), going to work (us) and taking Sabrina to her annual physical (Dave) because we are romantic that way. Hopefully, we'll have a nice dinner tonight over wine after the kids go to sleep.


I think about our wedding often, particularly because we have wedding photos scattered around the house. The DVD and album are in a cabinet in the living room, and the kids think they’re a laugh riot. Sabrina can’t understand why we had such a fun wedding and she didn’t get to go.

Our wedding actually was a whole lot of fun. One relative likes to remind us about how, when Dave said "I do" the rabbi asked, "Is that your final answer?" Dave and I danced for hours. One of my favorite parts was when friends raised each of us up on a chair and Dave and I held hands, bouncing around in the air and seeing all the people we loved around us.

I keep my dried wedding bouquet, once chocolate-brown roses, above our bed 

This toiletries case, from our honeymoon in Bali, comes with me whenever I travel. It’s getting a little worn but I love it because it reminds me of that happy time.

Were we happier back then?

It's too easy to get sucked into melancholy. Like many parents, I occasionally long for my pre-kid life, when we were more carefree and not beholden to schedules and appointments. (Although I'd like the pre-kid life with the KIDS in it—hey, it's my fantasy!)

Yes, Dave and I have definitely experienced "for worse" in ways we could have never imagined when we said our vows. Those two weeks in the NICU were a hell all their own. We have more to-dos and responsibilities, and more serious ones, than other parents we know. But we have helped and supported each other in ways we couldn't have imagined, either.

There has been much "for better" in our lives. We don't just love the kids, we get bliss highs from them. We still enjoy each other's company and laugh a lot. Dave still calls me by the silly-sweet nickname he came up with soon after we met. We still do things together we like—catching movies, downing sushi, hanging in bookstores, roaming around aimlessly in the car and looking at houses, traveling (even if it involves Mickey Mouse). We still share dreams about the future.

Dave is still the guy I married, just as warm, easygoing, funny and wise. And I love him as much as I did back then, perhaps even more so because I found a whole new side of him to love after Max was born.

Happy anniversary, love.

What do you most remember from your wedding? What stuff around the house reminds you of it?

Friday, January 11, 2013

Special Needs Blogger Weekend Link-Up: You in?


Here we are, another weekend link-up for bloggers with kids who have special needs.

The idea

Share a favorite post of the week.

What to do

Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of your blog followed by the title of your post (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: I Like To Pretend That Every Day Is Friday

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

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

Happy linking!

Thursday, January 10, 2013

Disney Cruises and kids with special needs: a review of The Fantasy


Disney Cruises and kids with special needs: Max gives them a big thumbs up. Yes, we all seriously enjoyed our cruise on the Disney Fantasy, but Max was in his own heaven; he's been talking about the trip literally every single day for the half year leading up to it. Even while we were on the ship, he was already plotting his next visit. Our cabin had a photo of the four Disney ships—The Magic, The Wonder, The Dream and The Fantasy—and Max would point to The Dream and stare at us, expectantly. I told him he could start saving up for it!

Our Caribbean cruise was seven nights long, a good amount of time for Max to settle in and feel comfortable; like many kids with sensory issues, once he's familiar with a place, he's more willing to explore and try new things. This is the Disney Fantasy's first year of sailing; we were cruise #40. These were our experiences on the ship, plus some other scoop on Disney cruises with kids who have special needs.


What accessibility is like for kids with special needs


The staterooms are compact, but well laid out. The couch converts to a bed, and another drops down from the ceiling. We got a room with a verandah, which costs more but makes the room feel more spacious (rest assured, the verandahs have plexiglass as do all railings, so no worries about kid overboard).

The bed was one of the most comfortable ever, with crisp Frette linens (plus one home-imported Cars pillowcase, of course)

There's a small fridge in the room, where we kept Max's anti-seizures meds, along with the chocolate milk cartons he hoarded from the breakfast buffet (shhh, don't tell). Every room comes with two Wave phones, helpful for staying in touch with staffers at the kids clubs. And there's a Health Center, with nurses and doctors, just in case (though if you have specific medical concerns, you should call in advance).

The ship has 37 accessible staterooms and suites (here's a review of one and a video of one). Guests could request bedrails, raised toilet seats, shower stools and more. Decks are very spacious and doorways wide, with many opening automatically. The restaurants are easily accessible. Theaters have dedicated viewing areas for wheelchair users, and offer assistive listening devices for performances; transcripts of shows available at Guest Services. 


On Castaway Cay, Disney's private island—of course Disney has a private island!—there was a tram, plenty of paved pathways, sand wheelchairs free of charge and accessible restrooms. We chauffeured Max around in a wagon. (For the complete Guests with Disabilities list of offerings, click here).

What the noise level is like for kids with sensory issues

On our previous cruises, the Disney Cruise Line Terminal—in Port Canaveral, Florida—was super-crowded, which wigged Max out. Now that Disney has instituted timed boardings (you select a port arrival time when you do on-line check-in), the scene was much more chill and we breezed through. Crew members standing in the lobby of the ship announce each guest, and so if your child doesn't like loudness you can just tell them not to say a thing, as we'd done before. This time, though, Max told me he wanted them to say "Yay, Max!" and clap, and they gladly obliged. Then they said "Welcome, Sabrina!" at her request. And then, Max wanted them to say "Yay, Max!" again and clap, and they did. Max likes his standing ovations.

The ship is tremendous (there are 1250 staterooms), yet even though there were some 4000 passengers onboard our cruise (and 1400-plus crew), it really never felt crowded. We came armed with noise-blocking Sperian headphones, and they usually kept Max secure and calm. There are occasional stateroom announcements that aren't too loud, all preceded by the openings notes of "When You Wish Spon a Star." Max loved that tune, and now, he asks me to hum it to him at bedtime.

A crowd tends to build outside the restaurants during seating times (there are two: one at 5:45, one at 8:15). As it turns out, the only thing you miss if you arrive a little past your seating time is...the line!
Before our cruise, I'd put in a request to be put in an area that was out of the fray, and that helped. Animator's Palette has some amazingly cool tech activities, including one where drawings your family makes become part of an animated cartoon they show on screen; Max was wary of that, and so we did room service with him that night before dinner and let him hang in the kids club.

Of course, there's ice-cream galore; the machines don't open till late in the morning, which helps avoid I-want-ice-cream-for-breakfast stand-offs with the kids

We were on the cruise Christmas week, and they had several big lobby celebrations, including visits with Santa and a Children's Choir. These were packed events that may overwhelm kids with sensory issues. If you wander through the lobby early Christmas morning, though, it's near empty—except for smiling staff greeting you with hot chocolate and holiday cookies.


What dining is like for kids with special needs



For breakfast and lunch on the cruise, you can take your pick of dining spots. We usually did the breakfast buffet at Cabanas, and grabbed lunch from one of the casual eateries. For dinners, you rotate between three restaurants according to your assigned schedule; we had the same waiter, Ciao, and assistant waiter, Lucio, for all dinners. This was great, because they were both super-friendly and also knew to have chocolate milk for Max and all our drinks ready and waiting for us.

At the first dinner, Ciao asked about any potential allergies; I told him Max had an aversion to nuts and homework. Max was a little nervous about settling into the restaurant on the first night, and Ciao helped calm him down by making him a ketchup Mickey Mouse. Score! Max is still impressed when I do this at home, though I don't know how long that will last.

Max loved Flo's V8 Cafe (of Cars' movies fame)

Max ate a whole lot of mac 'n cheese on the cruise. When he wanted to eat in the kids club, we just arranged with Ciao to have his meals delivered there. Several times we ordered room service, which had a good amount of offerings and came surprisingly quickly.

In general, the dining department accommodates all types of dietary requirements.Waiters are aware of which items are gluten-free, and you can also order items on demand. If your child has allergies, you can bring an allergy plan to share with the kids clubs. Guests are supposed to submit any special dietary requests in writing to the Disney Cruise Line Special Reservations Department four weeks prior to the sail date; get the dietary requests form at 1-800-951-3532. (For more great information and other resources, check out Allergy Free Mouse.)

What the kids clubs are like for kids with special needs


The Oceaneer Club's dance floor

I can't say enough good things about the Oceaneer Lab and Oceaneer Club, both for kids ages 3 to 12. Staffers were beyond accommodating. What's new about this ship (and The Dream) is that the clubs are connected, so kids can go back and forth between them, and also have lunch and dinner there.

Max particularly liked the Club. There are four themed areas: Andy's Room (Toy Story); Monster's Academy (Monsters, Inc.), Pixie Hollow (inspired by the Tinkerbell movies) and Explorer Pod, where kids can hang out in a Nemo-inspired submarine with computer stations.

Can you guess which room this is? Ding, ding, ding!

The Lab's themed areas include a media room (with bean bag chairs for watching movies or reading), Animator's Studio (for drawing or learning to sketch Disney characters), Sound Studio and Craft Studio. Max's fave was The Wheelhouse, where kids could steer a ship in a Pirates of the Caribbean video game. He had a blast when the Oceaner Lab had a Piston Cup Challenge in which kids designed their own race cars.


Before we registered the kids, I spoke with Andrea, the Manager of Youth Activities. I wanted to make sure someone could help keep an eye out on him, help him with coloring or other fine-motor activities, and also assist at feeding time and with the potty, since pulling pants up and down is a challenge. Andrea actually remembered Max from our last cruise! While there is no guarantee of a one-on-one ratio for a child at the club, things worked out. We never once got paged to help with the potty. The staffers were amazingly warm, cheerful and friendly; by the end of our cruise, every one of them greeted Max by name.

Face-painting with Sami, one of Max's fave counselors

A note about potty training: The official Disney site notes that the kids clubs are only for potty-trained children; this is because crew members cannot change kids. On our previous cruises, we were given pagers and Dave or I would show up whenever Max had to be changed.

Basically, the kids clubs were a fantasy come true for Max and Sabrina and us, too; it isn't always easy to find clubs so accommodating to kids with special needs on trips.

Sunday morning, Dave and I had brunch at Palo, one of two adults-only restaurants (it's best to book it months ahead of time). Hel-lo, dessert station!

While the kids are in good hands, you're free to take a class (like one for tasting or folding towels or yoga), go on a guided tour of the ship, play trivia games, listen to live music, hit the spa or just loll around, perhaps on the wonderfully serene adults-only deck on Deck 14. I chose lounging!

What activities are like for kids with special needs



There are dozens of activities to choose from every day. You get a "Personal Navigator" newsletter delivered to your room the night before that lists all the offerings. I'd brought a highlighter and we marked the stuff we wanted to do. Max liked the family dance parties; the music was loud, but he had his trusty headphones on and he got to dance his heart out with the characters.

The Family Crafts events, like card making and create your own tote bag, were not that crowded and Max really enjoyed them. Another great activity for kids with special needs: The Midship Detective, an interactive game kids can play on their own timeframe. Basically, you get a card with a special bar code that you hold up to video terminals on different floors for clues to solve a mystery like finding stolen puppies or missing artwork. You can do this whenever you want (it lasts 90 minutes, total) and is a nice, quiet activity.

Max enjoyed the Shutters photo studio game in which you find and tap your photo from a bunch that pop up 

There are three freshwater pools on the ship; early morning and before dinner are decently non-crowded times to hang in them, but port days are the best (ditto for other activities on the ship). The Fantasy has a non-permanent pool lift (a mechanical arm) available in the family pool area jacuzzi on Deck 11 (it's not yet available in the pools), as well as in the Quiet Cove pool and jacuzzi (for adults); you should request it in advance when you book.

Mickey's Pool, just two feet deep

The easy-access Nemo's Reef Wet Play Area

Sabrina particularly loved the pool right in front of the humongous movie screen, so she could wallow and watch

The AquaLab, a water play area on Deck 12, is also easy-entry 

Even if your child is wary of the AquaDuck water coaster (a flume ride inside a large tube), he might be content to just watch it, as Max was.

Our own private foosball tournament (aka sneaking in occupational therapy)

Sometimes, just walking around the ship and taking it all in is activity enough

What entertainment is like for kids with special needs

There are three big shows on the cruise every day in the main theater; we saw Aladdin, Disney Believe (with lots of character appearances) and Disney Wishes. There are also other variety shows, like the performance team Buckets N Boards and a hypnotist. Max has only seen a live theatrical performance a couple of times because the volume is too much for him, but given his love for the characters he could not resist those big shows. The two of us stood behind the back row and watched; he was mesmerized.

Sabrina got to guest star in the magic show, her dream come true

People dress up for Pirates of the Caribbean night (plenty of kids brought costumes) and party on the deck; that was too much for Max to handle. He was more than happy to hang it in the room and watch Cars On Demand, which offers a whole bunch of Disney movies free from classics to newer ones.

The cruise also has screenings of current movies; Sabrina and I saw Wreck-it Ralph in 3D, and one evening Dave and I saw Lincoln. One day Max got brave enough to venture into the movie theater, stand on the side on watch part of Monsters Inc. in 3D—a major breakthrough for him. That's one of the great things about vacations for Max: It encourages him to break out of his comfort zone.

What visiting with characters is like for kids with special needs



Guests form lines to see princesses or characters (and Max wanted to see as much Mickey, Goofy and Donald as possible). They can get a little long but they're usually calm; the mid-ship ones on the 4th floor, by the Vista Café, tended to be a little less populated than the ones in the lobby.


A photographer and staffer stand by the characters to take photos you can purchase, and snap ones for families. Max would only stand right by the photographer, mesmerized by Pluto, Goofy, Mickey, whoever. The head of the character team told Dave and me that one of us had to wait in line to hold a spot. This was a challenge because it was often just me and Max waiting to see a character; I knew if I went to wait on line and left Max, there was a good chance he'd make a beeline for Mickey and crash other people's photos. We did the best we could: We arrived early to avoid lines, or stood around after a character left so we could be first for the next one. A couple of times, a cast member waited online for us.  

If there was one thing Max would have changed on the cruise, it was the standing-around-waiting part. He has decent stamina but the cerebral palsy makes his muscles fatigue easier than other kids, and sometimes at night he'd trip and fall when his legs gave out. As the email I got from a Guest Communications supervisor after the cruise noted, "For guests with stamina concerns, usually alternate areas or wheelchairs are available." Neither would have worked for us, but it's good to know. Of course, we could have chosen to cruise during a less busy week, too, as we've previously done. 

I'll tell you what would be amazing: If the cruise had dedicated character viewings for kids with special needs. Perhaps in a room, with dim lighting and seating areas. And cocktails for parents! Yeah!

Offshore excursions and kids with special needs

The ship docks in Grand Cayman, Cozumel, Costa Maya and Castaway Cay. You can book excursions through the ship; I made a couple of our own. Max decided to stay onboard in Cozumel but in Grand Cayman, we did a Stingray Sandbar excursion through Native Way Watersports—fascinating and memorable. Co-owner Sharon, who picked us up on the dock, could not have been nicer; after the trip she even took us to get smoothies. (She also offered to let me come crash at her house should I ever have a mid-life crisis, which I will definitely keep in mind.).


We took a 20-minute speedboat ride to a sandbar that's about 100 yards wide, with stingrays galore. I didn't know how Max would actually feel about it but he couldn't get into the water fast enough to check them out.

Stingray central!

Hanging with a stingray; we even got to feed it squid. Max suggested he might like mac 'n cheese. 

If you have questions about cruising with a child who has special needs, call the Disney Cruise Line Special Reservations Line at (407) 566-3500, press 1 and take it from there.

Oh, and have a magical day.

Disclosure: We received a discount from Disney Cruises and a complimentary excursion, but the opinions (and bliss) expressed here are solely my own.