Monday, January 23, 2017

The uplifting powers of seeing the world through your children's eyes


"DIS!" That is Ben's first and only word. He points to objects and says "DIS!" and I tell him their names: my mouth, my boobs, the light in his room, the pillows on the couch, a toothbrush, a plant, all the things. I'm often down on the floor with him, exploring: Wow, door hinges! Wow, cabinet knob! Wow, pots and pans and lids! Other than realizing how many dustballs exist in our home, I love seeing the world through his eyes. It gives me new perspective.

Ben's a curious tot. He doesn't just like to plunk away on his toy piano—he wants to turn it over, poke at the screws and figure out where the sounds are coming from. He's as fascinated by the packaging of toys as much as he is by the toys. "DIS! DIS! DIS! DIS!" 

He shares Max's fascination with fans. I still remember Dave and I going to lunch after we'd taken Max, then about ten months old, to a craniosacral session one Sunday. (It's a holistic treatment said to release restrictions in the body and enable movement—we were game to try anything to help Max crawl.) We put Max on the table in his car seat. There was a fan above us and Max giggled heartily. We laughed along with him, and it felt so good because I was a ball of anxiety back then. Ben smiles delightedly at fans, too. We were in a restaurant this weekend that had one and he kept staring at it expectantly, hoping it would start. 

I get to explore the world through Max and Sabrina's eyes, too. Max is always game to go somewhere new lately—a new restaurant, a new place, a new experience (like when he and Dave walked across the Brooklyn Bridge). In recent years, Max and I have visited a whole lot of fire stations and met a whole lot of amazing firefighters. He can make even a trip to the supermarket interesting, because he likes to buy new foods (especially new kinds of ice-cream) and he likes to ask, "What's that?"

Sabrina is a bit jaded these days (see: tween). But she still gets excited about stuff. We watched a dance performance the other night, and she had those proverbial saucer eyes. She's interested in technology, art and...shopping. A couple of weeks ago, I took her to see Raiders of the Lost Ark at a performance center, accompanied by an orchestra. It's one of my favorite movies of all time, and introducing her to it was a thrill. She literally sat on the edge of her seat for most of it, making the night that much more enjoyable for me. 

I get so burned out at times. The kids, with all their needs and demands, may be partially the cause—but they are also the cure. Because no matter how I'm feeling, they make me realize there is so much to see, discover and savor in this world. That's given me hope when I haven't been feeling it lately. 

It's awesome to watch Max and Sabrina seeing the world through Ben's eyes, too. They laugh when he squeals in delight because, say, he's just discovered that he can squirt water out through his mouth. They steer his walker with him because he's still figuring out how to navigate curves. They watch him happily as he figures out how to pile up stacking cups. 

I watch them, and the wonder lifts me.


Friday, January 20, 2017

The Special Needs Blogger Weekend Link-up: Need a distraction? Here you go


What to do if you're new here

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

Like this: The better part of the worst

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

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

Thursday, January 19, 2017

Hey, Betsy DeVos: I invite you to do homework with my son with special needs


Social media is still buzzing about Tuesday's confirmation hearing for Betsy DeVos, the nominee for Secretary of Education. Among the many voices of dissent: special needs parents and advocates alarmed by DeVos's seeming lack of familiarity with IDEA—the Individual with Disabilities Education Act that guarantees children with disability a "free and appropriate public education" that takes place in the "least restrictive environment."

This is troubling. But it raises other concerns about DeVos's base of knowledge.

In a nutshell, Virginia Senator Tim Kaine asked DeVos whether all K-12 schools receiving government funding should have to abide by IDEA. She responded, "I think that is a matter best left to the states." Fact: IDEA is a federal law that mandates education equality for students with special needs in every state. New Hampshire Senator Maggie Hassan (who has a son with cerebral palsy) followed up with Devos, who admitted "I may have confused it."


Hassan also expressed concern that some voucher programs—which DeVos supports—require students with disability to give up their rights under IDEA. (A school voucher, aka an education voucher, is a certificate of government funding for a student at a school chosen by him or his parents.) "I would urge you to become familiar, should you be nominated, with the Individuals with Disabilities Education Act," Hassan said. "I do have to say I'm concerned that you seem so unfamiliar with it and that you seem to support voucher schools that make students sign away their rights.... That's very troubling to me."

Senator Elizabeth Warren also grilled DeVos, this time about managing a trillion-dollar student loan bank and distributing 30 billion dollar in Pell Grants to students each year. Warren asked if she had experience running a bank or overseeing major loan programs. Nope. Then Warren asked about her personal participation in these programs, noting "I think it's important for the person who is in charge of our financial aid programs to understand what it's like for students and their families who are struggling to pay for college."  

THAT. Understand. It's vital for a Secretary of Education to grasp not just the struggles of students with financial concerns but ones of students with special needs, too. And there are a lot of them: Recent estimates reported by the CDC indicate that about one in six children school-age children (ages 3 to 17) have a developmental disability. That's 15 percent of children.

Understand.

And so, Betsy DeVos, I invite you to stop by our house one early evening, when I get home from work and I am doing homework with my son, Max. He is determined, responsive and bright. He also has intellectual disability (ID). You can sit with us and see how it goes. 

Max has come a long way. He can focus well. He uses an app, SnapType, that enables me to take photos of worksheets so he can type in answers (handwriting is a challenge). His reading is improving. He has a grasp of basic math. But it does not come easy to him. Homework takes a long time to do, especially when Max is typing out his answers. 

On the nights when we do his current events assignment, we choose an article from a kids' news site (ideally, something about fireworks or Disney World). I simplify the text and explain the basic concepts. Then we go through a series of questions: What's the title of the story and the date? Is the story local, state, national or international? What is the main idea? What is your opinion? 

We do the same, more or less, for his book reports. Typically, when I ask about the main idea, Max stares at me blankly. "I don't know," he will finally say, resting his face on his hand and looking somewhat dejected. At times, there have been tears. Even when I reread pages of the book or explain the article again, he has trouble answering. 

I reassure him that it's OK. We work it through. But I feel awful that his lack of understanding bothers him. I grapple with the fact that grasping ideas and scenarios that go beyond life as he knows it is difficult for him.  

Max, like other youth with ID, learns best from repetition. He needs information repeatedly explained and hammered into his head to understand it, process it and retain it. This is so critical to Max's learning existence that when I recently checked out a high school for him, and was told that there was a longstanding no-homework policy, I knew it wasn't the right place for him. I pressed the principal on it, and the reason boiled down to this: Students are tired when they get home and homework is a burden for parents. My reaction boiled down to this: WTF?! To be sure, Max is fatigued at the end of the day. I am, too. I'm not saying every child with ID benefits from homework, but he does. Our children have diverse needs, as all children do.

I wonder just what knowledge Betsy DeVos has, if any, about this segment of students and their needs. (Or any students, for that matter.) Should she become Secretary of Education, parents and advocates will stay on her to preserve the tenets of IDEA. But we will also expect her to understand what it means—and takes— to educate a student with intellectual disability, and the challenges my son and others like him face. Without that, there can't be development, progress or innovation. Without truly knowing the population, she can't understand the potential.

Her learning curve will be steep. But the person in our country charged with spearheading the education of our children should truly know the community she serves, the entire spectrum of it. Otherwise: #fail.

Wednesday, January 18, 2017

Living in the past and loving it


This weekend, I took Max to visit Hoboken, NJ, where I lived during my twenties. It's my happy place, because I have such fond memories of going out to restaurants and bars, throwing parties with my roommates in our apartment and rollerblading down Sinatra Drive. Max and I stopped by the Hoboken Fire Department Museum. As it turned out, he had just as much fun exploring my past.

First up, a trip to Planet Mac, a restaurant that specializes in mac 'n cheese. Max was duly impressed. It was not around when I was living there, which is a good thing as I would have gained eleventy billion pounds. 

When Max found out that this fire truck is in the local Memorial Day parade, he informed the museum staffer that he would like to be in the parade. Who knows, one of these days I might be able to make his parade fantasy happen. 

Of course, there's nothing like visiting an actual fire station. Hoboken has four of them, but Max was surprisingly content to just visit one. As Firefighter Eugene showed us around, Fireman Max had questions: Had there been a fire that day? Was there going to be a fire tomorrow? Was the siren on the truck very loud? Did he drive the truck? Was the truck old or new? Were they going to get a new fire station? Firefighter Eugene answered them all. (No, we don't know, yes, yes, brand new, not for a long time.)

The first apartment I lived in, on the third floor. Surprisingly, there is no commemorative plaque bearing my name.  

The building one block away where I bought a condo, also on the third floor. I was five months pregnant with Max when we moved out to the 'burbs. 

The last time I roamed around Hoboken, in 2012, I'd felt pangs of sadness about my carefree twenties and not knowing what lay ahead. But this trip was all joy. It was great to have a day alone with Max. His curiosity was exhilarating. 

It took a long time for Max to grasp the concept of what today, yesterday and tomorrow mean. Now, he regularly asks about what's happening the following day. He wants to know what I had for dinner the previous night if I went out with Dave. And he is very interested in hearing about my past and his. As we walked around Hoboken, hand in hand, I told him that I lived there with Dave when he was in my belly and then we moved. 

Max wanted to know if I had loved Dave when we lived in Hoboken. (Yes.) He wondered where Sabrina was at the time. (Not born yet.) He asked if I liked living in Hoboken better or our current city. (I like them both a lot and someday it would be fun to live in Hoboken again.) (Max would prefer to move to Florida, ideally to Disney World.) 

I loved his questions. 

I loved that the two of us were having real conversation. 

I loved walking around with him on the streets I knew so well, reliving the past, enjoying our present and taking yet more steps toward a bright future. 

Tuesday, January 17, 2017

The better part of the worst


Saturday, Dave and I celebrated our 16th anniversary. We went to a friend's party at night, and I got into a conversation with some women there about childcare. I boasted about Dave, who has always and unhesitatingly changed diapers and fed the kids. What I couldn't get into with a group of strangers is just how amazing he's always been with Max, from day one.

Nobody ever really ponders the "for worse" part of your wedding vows. I mean, who knows what the future holds? You assume that the wonderful person you fell in love with will always be there for you. You think he or she will be a great parent. You certainly never imagine that your firstborn will have a stroke at birth and end up with cerebral palsy. You never imagine you will have a child with special needs.

As much of an optimist and can-do person as I'd always been, I was mired in grief. I felt sad about what had happened to my baby, worried sick about his future and devastated for Dave and me. Dave grew less despondent as weeks passed. Not me. I cried in the shower, when I drove Max to therapy and sometimes as I breastfed him. One night, I lay in bed and sobbed. "This is my worst nightmare," I blurted. And Dave, who was standing beside me holding Max, said, "Honey, look at him, does he look like a nightmare? He's beautiful."

That was Dave, forcing me to appreciate the present instead of dwelling on the past and freaking out about the future.

He'd sing silly songs ("Max makes big DOOODIES!"). He'd get Chinese food for dinner and spoon-feed it to me as I sat on the couch and nursed Max. He'd cuddle Max and tell him that he was going to grow up and be great.

I couldn't have ever known this would be the "for better" of the "for worst."

That first year with Max was the hardest one of my life as I struggled to accept what had happened, organized Max's therapies, did the exercises with him, took him to specialists and tried to not obsess about all the milestones he was missing. Through it all, Dave stayed steady and strong.

Back then, Dave had more flexibility in his job than I did. When we decided to get Max hyperbaric oxygen treatment, Dave would leave work early for sessions (we did around 40). He'd lie with Max in a glass tube as a technician infused the chamber with oxygen, in hopes of sparking dormant parts of the brain surrounding the damaged areas.

I couldn't have known this would be the "for better" of the "for worst."

When Max woke up with seizures on three different occasions, and his body convulsed uncontrollably with his eyes rolled up in his head and we called 911 and we watched helplessly and it seemed like death itself was hovering over our boy, Dave and I clung to each other. For weeks, I was haunted by what happened. "The medication will help," Dave would remind me, hugging me tight. "He will be fine."

I couldn't have known this would be the "better" of the "worst," either. Oh, no. I couldn't have known.

Of course, Max turned out to be the best, not the worst: a cheerful, loving, determined, seriously cute boy. To know him was to adore him.

As Max got older, he and Dave started going on boys' days out. It began with trying new restaurants. Then they went on road trips—to an uncle in Rhode Island, to Diggerland USA. They took train rides to nowhere, just for fun. They'd roam around New York City and recently walked across the Brooklyn BridgeThey visited Chicago, especially because Max wanted to see the fire trucks there. This spring, they are going on a long weekend to Disney World along with Dave's dad.

When Max was a baby, I'd get sad when I looked at our glowing, happy faces in the wedding photos. We had no idea what would happen, I'd think. But now, I look at those photos and I think how lucky I am.

Friday, January 13, 2017

The Special Needs Blogger Weekend Link-up: post on!


What to do if you're new here

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

Like this: Cruising with Autism on the Seas: one happy trip for all

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

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

Thursday, January 12, 2017

I've reached Inbox 209,375! Squee!


I shocked a friend during her recent visit to our home when I put my iPhone down on the kitchen table and she glanced at it.

"OH MY GOD!" she screeched. "You have over 209,000 unread messages! How do you handle that?"

I had 209,375, to be exact. The obvious answer: I don't handle that. I have many goals in life, but Inbox Zero is not one of them.

If I've learned one thing from raising my kids, it's that perfection is overrated, unattainable and stress-inducing. Even if I did spend a week whittling the junk mail, store announcements and sales, news alerts, blog solicitations, product pitches, school flyers, newsletters and yada yada down to zilch, then what? Twenty more emails would arrive within the hour. I'd have to forever keep up with taking out the email trash. Who needs that pressure? Who has the time? Aren't there 209,375 things I'd rather be doing than going through my inbox? Y-e-s.

For the record, I'm not typically cavalier about getting stuff done. I'm on top of my personal to-dos, office to-dos, the kids' to-dos and our family/household to-dos. Work peoples, fear not, I open all the work emails. Friend peoples, you know I always respond. Mrs. Grace Remond of Burkina Faso who wants to transfer $6.8 million dollars to me, give it up. Ryan Gosling, definitely let me know if I've missed an email from you.

I actually take a strange kind of pride in those unopened emails. They are a sign not of laziness or overwhelmed-ness but a life well lived. During the time I have ignored my email pileup, I have...

• Read some good books
• Played and laughed with my children
• Went to dinner and a movie with my husband
• Let the baby lead me around by one finger as he's learned to walk
• Let the baby roll on our bed and squeal in delight
• Escorted my firefighter wannabe son to the local fire station
• Called my mom
• Connected with friends on Facebook
• Exfoliated! Soft skin is ever so much more fab than an empty inbox.
• Celebrated my family's birthdays
• Prepared my own iced coffee and savored it (love you, Grady's Cold Brew)
• Crocheted
• Played piano
• Took trips with my family
• Gone out for sushi with our family
• Ordered in lots of pizza, too
• Went on various Netflix, HBO and Amazon Prime binges
• Bought myself flowers
• Had brunch with friends
• Doodled! Mindless scribbling is ever so much more fun than emptying an inbox.
• Took my daughter to see Raiders of the Lost Ark with a live orchestra performing the music
• Wandered around new neighborhoods with my family
• Slathered on awesome coconut body lotion
• Went for walks alone
• Shopped for shoes
• Watched viral videos typically involving babies and/or cats
• Went to parties
• Wandered around YouTube when I've been struck by random song obsessions like Sir Duke
• Took lots of great photos of my children
• Plucked random chin hairs (arguably far more satisfying than an empty inbox)

In other words, I've lived and loved my life instead of trying to not only achieve the impossible but maintain the impossible.

"Reached Inbox Zero" read no tombstone ever, although it could be a good one for the guy who coined the concept.

Since I've been writing this, I've hit 209,411 unopened emails. Wheeeeee! I'm off to celebrate by watching another episode of Westworld.

Wednesday, January 11, 2017

The painful parts of the form you're filling out about your child


Every year, around this time, I fill out a form for a camp Max attends. I know it's not going to be easy. Not because the form is complicated, but because of the questions it asks that force me to confront the reality of his progress.

There are parts that I relish, like where the form asks about social abilities. I write that Max is one of the most friendly, cheerful people they will ever meet. "Participates and plays well with others"—check!

For "Communication," I check off "single words" and "attempts words," which are sandwiched between "uses full speech" and "non-verbal." I note that although at times Max can be hard to understand, he makes his needs known, and that he will be coming to camp with his iPad and speech app. Elsewhere on the form, I make it clear that he prefers to be called "Fireman Max."

For "toileting" I note that he needs partial assistance. This, too, was hard won, and four years later (we finally made it happen during the week after Hurricane Sandy when we were holed up in a hotel) I remain grateful that Max mostly uses the bathroom on his own even if certain parts remain a challenge.

And then, I get to "Dressing." And once again, I am checking off "Needs total assistance." And it makes my heart hurt, because every year, I check that off. Max does well with shirts from the Tommy Hilfiger adaptive clothing line, but otherwise he can't put on shirts, pants, socks or shoes on his own. I'm planning to have his home OT focus on pants in upcoming months.

And then, I get to "Bathing/Personal Hygiene." And once again, I am checking off "Needs total assistance." Max can more or less run a washcloth over his body, but someone has to pour the body wash onto the washcloth because he can't manipulate the bottle to do it. Same goes for shampoo. Reaching his hands up to his hair to suds up is hard for him.

And my heart is hurting. But still: I hope.

"He cannot yet dress himself," I write. 

Yet. 

I feel the need to say that. Because who knows what progress he will make this year. Maybe, just maybe, come next winter I will be checking off "Independent" the entire form through. Really, though, there is no deadline. If it takes Max the next decade to totally dress himself and/or use the bathroom on his own, so be it. Progress is progress, no matter how long it takes to happen.

And if doesn't happen, well, my heart may continue to twinge when I fill out forms...but I will also be reminded of how far he has come.

Tuesday, January 10, 2017

He's helping his little brother learn to walk


I spent the first three years of Max's life wondering if he would walk, right up until the moment he took his first independent steps on his third birthday. Yesterday, I watched Max coach Ben along; he's just started to toddle. Once again, I was struck by how far Max has come.

Max's early childhood was full of question marks for me: Would he walk? Talk? Learn to eat and drink on his own? Learn to pick up toys on his own? Learn the ABC's and numbers? I ached to know what he would be able to do.

I wanted that crystal ball. I took Max to specialist after specialist, looking for answers that they couldn't give. Because no doctor, no matter how remarkable, can foresee the future of a baby with brain damage.

I had one of those "If only the me of 14 years ago could have seen this back then" moments in the kitchen last night as Max stood in front of Ben, who was doing that toddler waddle. 


Sometimes, the baby grabs Max's hand and the two of them stroll around our first floor together as I tag behind them like a groupie, taking it all in.

Seeing Ben learning to walk is a thrill in its own right (it is for Max, too, if you couldn't already tell by his squeal). I adore watching the baby do that drunk Frankenstein gait, control his balance, plop down, get right back up again and grow more and more confident. I love watching Sabrina and Max encourage him.

But there's an extra layer of joy, and that is watching my big boy—the one I wasn't sure would walk—cheer his toddling brother on.

Monday, January 9, 2017

The torture of a teen with special needs: How we can fight the hate


By now, you've likely heard that four suspects in Chicago were charged in the torture of the 18 year old with intellectual disability. One assailant livestreamed part of what happened on Facebook. They were charged with hate crime, because of comments they made about the victim's race and mental capacity, along with kidnapping, aggravated battery and aggravated unlawful restraint.

As horrific as this is, as distraught as it may make you feel, there is something you can do to help stop hate toward people with special needs.

The teen was supposed to spend New Year's Eve with one of the four, an acquaintance from school, reports say; he picked him up in a stolen van at McDonald's. They ended up driving around for a couple of days, then went to an apartment where the torture took place.

I haven't watched the video. I've read that the boy's mouth was duct-taped shut, his wrists were bound, the arms of his sweatshirt were slashed, he was punched and slapped and stomped on the head and his hair was cut with a knife until his scalp bled. A second video that surfaced on Twitter showed the suspects forcing the victim to drink out of a toilet. After several hours, he escaped. Police found him wandering the streets in a daze, bloody and battered.

He is with his parents, and expected to recover. Who knows what kind of lasting impact this will have on his psyche.

Oh, how sickening this is.

And how our hearts ache for that boy and his family.

And how we wish for the people who committed these atrocities to get their due. There is no excuse for doing what they did to any person, let alone one with a reduced capacity to defend himself.

And how this makes us fear for our children if you have a child with special needs. Because we see in that boy our children, more defenseless than others. We fear that evil like this could come our children's way, and as much as we do our best to protect them we might not be there.

While the story will soon fade away in most people's minds, it will remain strong in ours, the nightmare that happened. We can't do anything to help that boy, although I hope the support people have shown in social media is of some comfort to the family.

But we can do something about the misunderstanding and ignorance that is often at the heart of hate.

If you have a child who's mentioned that something bad happened to a boy with special needs, or a teen who knows the story or who's seen the video, you could have an age-appropriate discussion about the incident and ask questions that can lead to an illuminating conversation such as: Why do you think anyone would bully/hurt a boy who has special needs? How do you think this made the boy feel? What can you do if you ever see someone doing something wrong to a person with disabilities?

We can open people's eyes to the bigger problem when they discuss this story. "Sadly, people with intellectual and other developmental disabilities are all too routinely victims of exploitation, misunderstanding and even violence," Special Olympics chairman Tim Shriver said in a statement. "Taunting and bullying remain an epidemic for children with intellectual disabilities (ID). Violence against people with ID is usually based on misunderstanding and ignorance and is all too often hidden." People with disabilities are more than twice as likely to be victims of violent crimes as those without disabilities, per a Justice Department Reported cited in a New York Times article on the topic. Advocates say the figure is much higher, as these sorts of crimes may not even be reported—especially when a family member or caretaker is the abuser. (CNN also has a good article about this.)

We can help others see the child, not just the disability, 
as parents of children with special needs regularly do. We tell the kid who has just asked, "Why doesn't he talk?" that our child talks in his own way, and we encourage him to engage with our child. We tell the teen behind the counter at the ice-cream store, "Ask him what he wants!" We inform the lady in the park who has cocked her head sideways upon sight of our child and muttered "Aww, poor guy!" not to feel sorry because our child is as capable of enjoying life as any child. Perhaps you think these encounters don't add up to much, but when lots of us do this, it matters. Also: If we don't, who will?

We can teach children who don't have special needs about ones who do, enabling them to understand that even if they look differently, talk differently, move differently or act differently, they are still children. Here are some talking points.

We can encourage people to use respectful language. Margaret Carlson's powerful op-ed in the New York Times about her older brother with ID notes that he was called a "retard" and that "for some comedians, it was a laugh line" but that "you don't hear it much anymore." Actually, people—especially teens—continue to use the word as slang for pathetic and stupid, unintentionally perpetuating negative stereotypes of people with ID. Some comedians continue to use the word derogatorily, as this one did in a loathsome skit that was eventually removed from the cable special it was in. What to say when you hear someone use that word? Here are some ideas.

We can speak up when children or adults with disability are treated unfairly or ridiculed. I'm not saying jump in and defend adults who are in the throes of defending themselves. I'm not saying you've got Meryl Streep powers to call out a future president on his imitation of a disabled reporter during your Golden Globes Lifetime Achievement Award acceptance speech. But, sadly, there's no lack of everyday sort of situations.

Last week, I was in the parking lot of Trader Joe's and there was a man in an electric wheelchair in front of me also heading toward the entrance. I watched as a middle-aged man walking with his wife burst into laughter after the man passed by and turned to watch him enter the store.

"He's just a guy in a wheelchair—what's so funny?" I blurted.

"That guy was going 55 miles per hour," the man said. He he he he. "He almost hit us!" He he he he. 

"He wasn't going so fast," I said. "Think how you'd feel if a stranger cracked up at the sight of you."

It wasn't much, just a quick exchange. Maybe that guy will rethink his perception of a person moving along in a wheelchair as comical, maybe he won't.

But I was glad I'd spoken up.

If we don't, who will?

Friday, January 6, 2017

The Special Needs Blogger Weekend Link-up: Share a post! Share two!


What to do if you're new here

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

Like this: Cruising with Autism on the Seas: one happy trip for all

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

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

Thursday, January 5, 2017

When I am the stereotype and he is not


Dave woke me up the other morning with this announcement:

"iPhones are durable, but it's not a good idea to leave them out in the rain."

Groggily, I asked what the heck he was talking about.

He held up my phone, its case slick from water. He explained that Max had been looking outside our deck door and started gesturing at something.

"Yes, it's raining!" Dave had said.

"No!" said Max. "Mommy's phone!"

And sure enough, there was my iPhone lying in a puddle. I'd been out on the deck the night before, sweeping away poop specks from two sparrows who are spending their winter break nestled in our awning. I recall placing the phone on the tip of our outdoor table, then moving the table so I could sweep. After that, I have no memory whatsoever of my iPhone. Thankfully, the case protected it.

I lose my iPhone approximately eleventy billion times on any given day, which makes me the stereotype of the hot mess mom. My best phone finder: eagle-eyed Max, who has an uncanny ability for knowing exactly where I left it. This mental acuity makes him not the stereotype of someone with intellectual disability.

Among the many things Max has taught me is that children with intellectual disability are not just categorically children with intellectual disability. Every one of them has unique strengths, smarts, abilities, senses of humor, likes, dislikes, wiliness and the gamut of traits that is humanity. One of Max's special powers: an incredible visual memory.

Max often helps Dave and me navigate shortcuts in our area. If I wear a shirt twice in one week, he will note, "Same clothes!" (How many 14-year-old boys have any clue what their mothers wear?!) He has learned to read not just by figuring out how to string together letters to form words but because he visually memorizes words wholesale. And when I once again misplace my phone, it's Max to the rescue.

"Max," I'll ask, "do you know where my phone is?"

And he'll trot off to the living room to retrieve it or gesture upstairs and sure enough, I'll find it in the bathroom, on a closet shelf or, once, in the hamper.

My iForget problem reached new depths during last week's cruise to the Caribbean. Over breakfast, I realized I left the phone in our cabin and ran to get it. Within a few minutes of settling back down at the table, I realized the phone was gone. For once, Max's radar didn't help. When I turned on Find My Phone from Sabrina's phone, I could see that my phone was situated in one spot, but the app couldn't direct me to exactly where it was. It was maddening. When I went back to the dining room, the director of restaurant operations reminded me to activate a sound from Find My Phone. I did. Nothing. But as I was about to leave, Pedro said "What's that sound?" And then he found my phone beneath someone else's table. How it got there, I'll never know.

Meanwhile, at our house, I'm lucky to have the human version of Find My Phone. He is equally sharp and far more cheerful, not to mention, cute.

Wednesday, January 4, 2017

Yet more baby steps toward independence


There's a fine line I regularly walk, and it's called figuring out how to safely give Max more independence when he's in a public space. I thought that our cruise on Royal Caribbean would be a good place to let Max bust out a bit. As usual, the only holdback was my own fears.

There were days when Max would wheel Ben in his stroller on the deck, out of my eyesight. That felt OK. There were times when I'd let Max amble around outside our cabins in the hallway (we had two across from each other), and that seemed fine too. 

I wondered about leaving him alone in the teen club, except it wasn't an issue because Max only wanted to be in the kids' club. 

I wondered, too, about whether it would be alright to let him take a walk by himself on the ship's promenade. Not that he asked too, but I could have offered and perhaps he would have said "Yes!"
Only I didn't offer. Cruise ships are like mini cities, even though they deceptively seem safer because they are in a relatively confined space. We were onboard with 4300 strangers. It didn't seem right to let him go by himself. 

When I have those awful visions parents have of bad things happening to their children, I picture some stranger trying to abduct Sabrina. She's a strong, feisty girl. She kicks and flails and yells and runs away. Max is also strong, and knows about stranger danger, but when I imagine the same thing happening to Max, I freak out that he will somehow succumb. And then I have to stop thinking about it because I can't go there. 

And then one night, Dave and I had reservations for dinner at Chops Grille, one of the cruise's restaurants. Autism on the Seas had respite care that evening; we could leave Sabrina and Max there, and put the baby in the tot club. Only Max kept saying he was tired. 

Another line I regularly walk is trying to not make Sabrina feel like her brother's keeper. I asked her if she would be cool leaving the program early with Max and taking him back to the cabin. I told her he could just crash in his clothing. She said OK and Max agreed to it as well, even though he regularly likes to point out that Sabrina is "mean."

I liked the idea of the two of them doing this on their own. It wasn't full-fledged independence for Max—that would have been letting him go back to the cabin on his own. He would have navigated it just fine, but opening the heavy cabinet door would have proven tricky. And again, I had reservations about him walking around alone. 

Max and Sabrina went to respite, Ben went to the nursery already asleep. Chris, the respite leader, looked a bit concerned when I said Sabrina and Max could walk back to the cabin together if he wanted to leave early. I reassured him that it was OK. 

And then, I put my children out of my head and enjoyed dinner with Dave. I have a talent for compartmentalizing, sharpened over the years to avoid worrying myself sick about Max. 

After dinner, we got Ben and went back to the cabin. Sabrina was in bed, reading a book. Max was sleeping peacefully, in his pajamas. 

Sabrina told me that one of the respite staffers had walked them back to the cabin. I was a little disappointed. 

"Did he help Max into his pajamas?" I asked. 

"No, I did that!" Sabrina said, and my heart swelled. 

Even though their bro/sis walk didn't turn out the way I planned, still, it was yet more steps forward for all of us.

Tuesday, January 3, 2017

Cruising with Autism on the Seas: one happy trip for all


For months, I'd wondered what it would be like to cruise with a teen, a tween and a baby. We've done several Disney cruises, and both Max and Sabrina loved hanging out at the kids' club (read: Dave and I were free to chill). But Max has aged out of kids' club and teen ones don't have the supervision he needs, so we had to find a new cruise fix. We booked a five-night Royal Caribbean International cruise through Autism on the Seas (AOTS), departing from Ft. Lauderdale, for winter break.

Contrary to its name, AOTS services children and adults with a variety of needs including Down syndrome, cerebral palsy and cognitive and intellectual disabilities. They also sail with Disney, Norwegian, Carnival and Celebrity, but Royal Caribbean was their first partner so props to them. AOTS charges a very reasonable daily fee of $15 to $25 per person, included in the total cruise fare.

Our ship, the Independence of the Seas, was booked to capacity (around 4300 passengers) but never felt particularly crowded. It was very clean, and the staff couldn't have been nicer or more courteous. 

There was fine dining. 

There was drinking...

...and yet more drinking. 

There was lounging.

There was getting hair braids in Jamaica...

...and eating coconut. 


One of Max's favorite activities, not found on any schedule: wheeling Ben around and around the deck. A lightweight yet solid stroller is key to travel contentment when you have a tot (or child with special needs in need of wheels), why I was grateful for our Joovy Groove Ultralight. At 13.9 pounds, it wheeled smoothly and folded up easily. Just as excitingly, Ben enjoyed napping in it. 

Autism on the Seas made the cruise stress-free, and that's saying a lot when you're on a trip with a child who has special needs. It started with getting onto the ship: AOTS had early boarding, at 11:15 a.m. (they also offered disembarkation at the end of the trip just for our group). Staffers were standing right at the entrance of the terminal to greet us, walk us through check-in and whisk us onto the ship. During the mandatory evacuation drill, our group got to sit inside in a lounge so that kids wouldn't be freaked by the commotion.

The AOTS crew, from left: group leader Chris Schwilk and staffers Charles Rotunno, Jon Estrada and Eddie Williams. 

There were four AOTS staffers for the seven children and teens in the program. AOTS staffers volunteer their time, and other than group leaders pay their own way. Chris is an associate professor of special education at Shippensburg University in Pennsylvania, Charles is a trained ABA therapist, Jon is a behavior specialist working with pre-K kids who have autism and Eddie is a teacher. 

AOTS had several private activity sessions just for our group, so nobody would have to endure crowds or long lines. Our group got to go on the FlowRider (simulated surfing), rock climb and ice skate.

Sabrina rides the waves.

Max got as far as wearing the shoes for the rock wall, then bailed. 

Amazingly, she stopped snapping selfies of herself to do this.

At mealtimes, our group had our own private dining areas. Staffers sat with families, jumping in to help with meltdowns or any other challenges. (Sadly, they did not intercede when Dave and I ordered all the desserts on the dinner menu one night.) For the cruise entertainment—including a dance show, an ice show, a comedy show and Grease—we had reserved seating in the rear of the theater. 

Always a man of leisure, Max particularly enjoyed hanging in the hot tub; here he is with Eddie, during one of two morning pool time sessions with staffers. 

When Max took an ice-cream break, Eddie was there to give him a hand. Max and Sabrina had a little competition going to see who could down the most ice-creams in a day; Max won (seven).

The last thing you want on a cruise: a sunburn. These swimsuits by Snapper Rock kept the kids protected (they're UV50) and styling.

Another key to cruise happiness: a big sister to help you look out the window.

On sea days, there was an hour and a half of AOTS respite time in the afternoon and then another for a couple of hours in the evening. On Day 3, the evening respite was for three hours so parents could dine on their own, without children. Yes, please! (We deposited Ben in the baby club.)

AOTS took over one of the ship's conference rooms; during respite they played games, did activities and showed movies. One evening when I came to pick up Max, I was told he'd been bopping counselors with a pool noodle. The AOTS staff also looked after siblings and other young family members as well. Our trip included an extended family of 17, and all the children went to respite.

I can't say enough good things about the staffers. They were wonderful with all the children and teens, and went above and beyond. We ran into a situation when Max got it into his head that he wanted to go to the kids club. We were turned away, because Voyagers was only for children up to age 11. Chris spoke with them, and after that they accommodated one very ecstatic Max. We were on call to give him a hand with toileting.

That turned out to be a challenge on the day we stopped at Labadee. Dave and I couldn't leave the ship since one of us had to be available. So Chris volunteered to return after lunch and be a point of contact. When the staff called him for a bathroom break, he went. Another day, when the staff tried to reach us on our ship phone but we didn't get the call, they reached out to Chris and again he went. I thanked him profusely. "No big deal," he said, and he meant it.

This trip wasn't exactly chill for me and Dave (life with two older children + a tot on the verge of walking = never chill), but it was a ton of fun, I got to read twenty whole pages of a book and we felt relaxed knowing Max and all of us were in good hands. 

My wake up call was at around 5:00 a.m. every day; his name is Ben. We were the first ones in the coffee shop on the promenade, where Annika would warm soy milk for the baby and give me a cup of ice for my iced coffee. You never do know what you'll find wandering around the ship before sunrise, and I came upon the plaque for the ship's godmother. I did a happy dance in my head as I read it.


Elizabeth Hill of Darbyshire, UK, started the Gamelea Countryside Training Trust to help young people and adults with physical and learning disabilities learn a range of horticultural and artist skills, in an integrated setting. They could use those skills to gain employment, including opportunities at Gamelea. Suddenly, I felt extra glad to be on the ship, even if it was way too early in the morning.

As we arrived back at the port, Max spotted another Royal Caribbean ship. 

"Next cruise!" he said, pointing to it. 



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