The following is an excerpt from Perfectly Human, a beautiful new memoir by Joseph Dutkowsky, M.D. Dr. D., as he is known, is an orthopedic surgeon and a past president of the American Academy for Cerebral Palsy and Developmental Medicine. He practices in the Bassett Health Network in Cooperstown, New York, and also teaches and researches at Columbia University in New York City, where he helped start up the Weinberg Family Cerebral Palsy Center. Max had the privilege of meeting with him a few years ago and adored him. In his book, he shares his experiences caring for people with disabilities for the past thirtysomething years, and what he's learned from them. Perfectly Human is filled with memorable stories and insights; infused with religious musings that reflect his life as a doctor and devout Catholic; and is as warm, funny and inspiring as Dr. D. himself.
I call them Grand Canyon moments. Never will I forget standing on the edge of the chasm with no rail or fence between myself and a step off a cliff to the canyon floor over a mile below. One looks out in awe at the grandeur, majesty, colors, and sheer size of this natural wonder. It is there that one stands in silent trembled humility in front of this physical manifestation of the magnificence of God that no words, photographs, or human thoughts can hope to adequately capture. Yet, it is truth that a single human person standing at this edge is far more complex, mystical, and loved than the great canyon at his or her feet.
The contemporary world of clinical medicine seems like anything but standing at the edge of the Grand Canyon. One is engulfed with rapid-fire decisions that change people's lives under the pressure of economics, emotions, and the ever-present government regulations and hospital administrations with their important agendas and monthly balance sheets. But then there are those times....
She was in her thirties and drove her power wheelchair in to see me. Her cerebral palsy had led to deformities for which she had already had multiple corrective surgeries. She was seated comfortably with her contracted arms resting on the clear plastic tray on her wheelchair. Her speech was difficult but understandable and we held a delightful intelligent conversation that included her mother, who had brought her to the appointment.
The young woman, who was in no pain, was working some hours in a program close to her home. I asked what I could do for her. She was very specific, saying she wanted me to inject Botulinum toxin in her arms to try to relieve her joint contractures. This medication, which has made its contemporary-culture fame in the plastic surgery world, has been used to relax muscles in persons with hypertonic cerebral palsy for decades. I said sure, I'd be happy to do that for her.
She gave her consent and I prepared the medication. With a very fine needle I injected the drug into the tight muscles of both arms at the spot where the nerve endings contact the muscles. The injections went without problems and we talked for a few more minutes. The young woman could feel her arms loosen up and she started to exercise them, opening and closing them.
Finally she turned to me and said, "Do you know why I wanted you to give me those injections?"
I said no.
With a big smile, she turned to her mother, reached out and said, "So I could hug my mother," and did exactly that to a big return smile from her mother.
And there I was, at the edge of the Grand Canyon. Absolutely lost for words as to how I was given the privilege of standing at such a magnificent place at that moment. Excerpted with permission from Perfectly Human. Photo of Grand Canyon: Flickr/Bernard Spragg
A father and son are driving down a highway. Suddenly, they get into a horrible collision and the father is killed. The son is rushed to the hospital. The surgeon looks down at the boy on the table and says, "I can't operate, this is my son!" How is that possible?
If you've heard this one before, you may know the answer. It came up in a discussion the other day at our temple about bias and prejudice in the United States. People with disabilities (PWD) were not a focus of the discussion, but as we sat there talking about Charlottesville and the time when swastikas were found in a local school's bathroom, I found myself thinking about Max, and the biases I had about PWD before I had him.
The only person I knew with disabilities growing up was a boy who'd visit the summer resort our family went to every year. He had intellectual disability, and kids used to chant the r-word at him. I remember thinking that he seemed so different from the rest of us. Other than him, my only other exposure to PWD was in public places, like the park or the mall. My parents never brought up people with disabilities. I only ever felt sorry for those in wheelchairs or who had Down syndrome. As I got older, I felt badly for the parents. It seemed tragic to have a child with disabilities.
Then I had a child with disabilities. And suddenly, we were the parents and child getting pity-filled stares. And I had to wrestle with my own biases about disability, and the reality of having a child with multiple ones.
And now, I know.
I know that you can have a disability and have a good, happy, satisfying life.
I know that having a disability is only one part of who a person is, not the whole.
I know that you can have a disability and plenty of abilities, like any other variety of human being.
I know that some of the biggest limitations people with disability come up against are society's attitudes toward them. Over the years, Max has been turned away from children's programs and camps by those who felt they were not equipped to handle a child with cerebral palsy. Our congregation back then did not have programming for kids with disabilities and worse, they weren't particularly amenable to instituting it. All of this has been frustrating, maddening and painful at times.
I know that having a disability means that you do not sit around feeling sorry for yourself, even if others feel sorry for you.
I know that having a child with disabilities is not a tragedy. Max is my awesome child, complete with his charms and challenges—same as my other children with their own particular charms and challenges. He is no less admired or adored because he has disabilities.
Because of Max, I know all of this. And I'm still learning about disabilities, all the time. But it doesn't require having a family member with disabilities—just an open mind, and an understanding that PWD are not one size fit all. If you've met one person with cerebral palsy, you've met one person with cerebral palsy. If you've met one person with autism, you've met one person with autism. And so on.
As to that riddle about the boy on the operating table, here's the standard answer: The surgeon who said "I can't operate, this is my son!" was his mother. When people can't figure out the answer, it's because of inherent biases we have about surgeons being male.
But that day, in our discussion group, the leader had another answer: The surgeon was his other father. And with that, most of us in the room were thinking of our biases about parents.
At times, I am acutely aware of that person I used to be who did not know anything about people with disabilities, let alone PWD. I can't change that, but I can air the biases I once had in the hopes of opening discussions and spreading the good word about about my boy Max and others with disabilities.
Whether on social media or in real life, we can all encourage awareness, acceptance and inclusion, along with a better understanding of what it means to have autism, Down syndrome, cerebral palsy and all the disabilities. Person by person, we can battle biases and change perceptions about people with disability—just as our amazing children do.
We lucked out this weekend: the loaner car given to us by the repair shop while our car was being fixed got a flat tire. It happened while Dave and Max were out, not far from the house, so they were able to make it back OK.
Flats are typically not considered fun. But they are when you're Max and a tow truck comes to your house to get the car—and you. Yep, he got to watch the car being loaded onto the flatbed. Then Max and Dave got a ride back to the shop, where our car was ready to go.
It was exciting for Dave and me, too: Keeping Max entertained is our full-time weekend job. "Where are we going next Saturday?" he starts asking on Mondays. "And Sunday?"
This is a good thing. A a kid, Max was hesitant to go anywhere; now, he wants to go everywhere. He likes going to science museums, shows and malls, along with street fairs when the weather is warm. Yet he is also quite content to roam around our town, the supermarket and Target. Stopping by the fire station is his idea of a great time. A train ride just for fun: Bring it.
Lately, Max is super-interested in going out for burgers. He went to Smashburger with his class this week, and then he insisted we eat there over the weekend. He is the only person I know who takes joy trips to Home Depot; he's been picking out appliances for his dream home in Jamaica.
I'd say it is a gift to be able to appreciate the simple pleasures in life. How many teens are too jaded to do so? How many of us are too busy to enjoy an outing without a purpose? (Furnishing a fantasy home aside.) How many teens and adults alike are too preoccupied with their iPhones to appreciate what's going on around them?
Not Max. He is out there having the time of his life eating samples at Costco. And his joy is infectious. When he went up to the counter and ordered his burger and avocado on Saturday, he was downright gleeful. "Wow, he is really happy to be here!" the cashier noted, and Max was.
Max has long been fascinated by tow trucks. When he was little, he used to tell us that he'd like for a tow truck to come and take Daddy's car away, which more or less happened this weekend. One more thing scratched off his bucket list.
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"I have one question, and it's a biggie," writes a reader. "HOW do you deal with a relative who insists that your child's special needs will 'pass' and that he'll develop on his own and that you're overreacting by getting him therapy? This only makes me want to overreact to her!"
Hive mind, I welcome you to weigh in.
What's the most excluded group of Americans, and possibly the most misunderstood? It's the 6.5 million who have intellectual disability. If you're the parent of a child with ID, then you know all too well how much people underestimate our children. I always found this so painful to encounter, as I've written about here.
Filmmaker Dan Habib is hoping to alter perceptions with his new film Intelligent Lives. You may know Dan from the first film he made, Including Samuel; it tracked his and his wife's efforts to include their son, who has cerebral palsy, in school and in all of life. Intelligent Lives follows several young adults with ID who will benefit from what Dan calls an "inclusion revolution." The film, narrated by Academy Award-winning actor Chris Cooper (whose son had cerebral palsy and intellectual disability), also details how people with ID have historically been treated—in short, horrifically. Until relatively recently, the adults in the film likely would have been institutionalized and forcibly sterilized.
There are many minds still to be changed. Samuel is now a senior in high school. While he's thriving and has benefitted from teachers who've had high expectations of him, Dan notes, "When we are out and about in the community, it's still common for people to talk with Samuel like he's a four-year-old, which makes him furious." Dan's goal in creating this film: To reduce the stigma surrounding intellectual disability, and reduce the segregation.
You can read more about the film on the Kickstarter page, where Dan succeeded in raising more than $35,000 to finish production of the film. Intelligent Lives will premiere this spring. Here's a preview, and here's hoping it changes a lot of minds out there.
Last week, I saw Screenagers, a documentary about teens and screen time. It was an illuminating and disturbing look at the profound impact iPhones, video games and other screen sucks have on our children and on parents, too. The film features families struggling with iAddiction—including the 13-year-old daughter of filmmaker/family physician Delaney Ruston—along with input from experts.
The journal Pediatrics devoted an entire November supplement to youth and digital media, with 22 articles covering how it can negatively affect cognitive development, language and attention development, psychosocial behavior and brain structure. For parents of children with intellectual disability, like me, it's particularly concerning how this could further affect their cognition. There are physical health hazards, too: One recent study found that children with ID, who already prone to less physical activity than their peers without ID, were four times more likely to develop high blood pressure—and those who were big on screen time were most at risk.
The colors, shapes and sounds on a screen trigger dopamine, a brain chemical messenger associated with feelings of reward and pleasure. It's easy to see, then, how actual screen addiction is possible, and why a teen might prefer this instant gratification over real-world connections. Besides, phones can serve as crutches during this socially awkward time of life. One girl in the film noted that looking at her phone gave her something to do in a crowd. This can be especially true for teens with autism, who may find parties and other social gatherings overwhelming.
Instagraming and snapchatting may be enjoyable, but the cumulative effect can literally be depressing: Adolescents who spend more than an hour or two a day peering at screens (social media, the web, Facetime, texting or video games) and less time doing nonscreen activities (in-person social interacting, sports/exercise, even homework) are less happy, concludes a new study in the journal Emotion. [Insert frowny face emoticon here.]
Exacerbating all this is the fact that teens lack self control, which can lead to much family drama. "Get off your phone/iPad!!!" is the most commonly heard phrase at our home. For Ben, it's "No more phone!" because he loves to grab mine, scroll through photos and watch tot videos—yes, he knows how to scroll and how to find videos on YouTube, not exactly accomplishments I'm proud of.
We have some extra challenges with Max. For one, his iPad has a speech app which he uses throughout the day, both at school and at home. (This is an amazing thing, why I once wrote Steve Jobs a thank-you letter). He also uses the SnapType Pro app for homework (he can take screen shots of worksheets and type on them) and works on grammar and math on IXL. So to remove his iPad would mean to take away his ability to communicate and learn—even if plenty of times he's using it to watch fire truck videos or do searches relevant to his current fixations, most recently, buying furnishings and appliances for his fantasy Jamaica home.
The other reality about Max is that he does not have a ton of ways of occupying himself. Sabrina will sit in her room and read a book. Max's reading is coming along, but he is not into doing that on his own. Sabrina will go to the mall with friends. Max doesn't have peers he can do that with, unless I organize and chaperone it. If Dave or I are not engaging him or taking him to activities, the truth—as awful as it may sound—is that his iPad is his BFF, one he can take with him everywhere.
Screen time was an even bigger issue when Max was younger, and the only way we could eat out as a family and avoid meltdowns was to distract him with movies on an iPad or a phone. These days, he no longer needs that; back then, though, Max could sit glued to the screen for the entire hour and a half at the restaurant, and Dave and I were downright grateful for it. It was our 9.7-inch savior. Some weekends, it still is, especially during winter when we hibernate inside.
A couple of Apple investors are after the company to do more to combat iPhone addiction among kids. That would be outstanding, but for now it's all about what parents can do. One mom in the film declared carpool to be a phone-free zone. I also heard about iPhone contracts that parents give their teens, like this one by blogger Janell Burley Hofman that went viral. I missed that opp, but I'm planning to sit down as a family and come up with guidelines for all of us, because Dave and I sure on our phones a lot.
Right now, the kids don't watch TV or videos on weekday evenings, Max included. We avoid screen time at the table, other than Max's speech app. That's worked well for us, but the weekends remain an i-free-for-all and that's going to change. When we have our family discussion, we'll make sure Max understands that screen time for communicating doesn't mean all-the-time video. I'm also going to look into programs that limit screen time and app access, including Qustodio, Norton Family Premier and FamilyTime, among others.
My favorite point in the movie was about planning more activities so your kids will be forced to tear their faces away from their screens and actually live life. It's a challenge coming up with stuff that interests Max, 13-year-old Sabrina and 2-year-old Ben, and too often we end up hanging around the house. But if we make it a priority, same as we need to make less screen time a priority, we'll figure it out.
When I think back to my childhood, the memories that have stuck with me are the things I did with my parents: going to Sunday puppet shows at the mall with my dad, staying in a cabin in Vermont on a family summer trip, seeing the Nutcracker in Lincoln Center in New York with my mom. Years from now, my children are not going to remember the Snapchats and YouTube binges. "Obsessing over Kylie Jenner's Instagram got me where I am today!" no future memoir will read. What's going to stick with my kids—what's going to help them develop and grow and explore and feel connected with both their family but humanity—is getting out there and seeing the world...not a screen.
You can find local screenings of Screenagers here.
We were at the bar mitzvah of a friend's son this weekend, attending as a family. Max had sat through a good part of the ceremony. He enjoyed the cocktail hour, downing sushi and mac 'n cheese (not together). And then, a couple of hours into the party, he decided it was time to go. To emphasize this, he started roaring.
The music was pumping and we were seated in a corner toward the back so it wasn't easy for most people to hear him, but we sure could.
Dave offered to hang with him in the hallway. ROAR.
I explained that we couldn't leave, we were there as guests and it would be rude. ROAR.
I noted that me and Dave really wanted to stay, and that the boy's father was a good friend of Dave's. ROAR.
Dave offered to get Max another glass of milk (he's on a milk kick). ROAR.
"Noise!" said Ben, frowning and pointing at Max. ROAR.
ROAR ROAR ROAR ROAR ROAR.
"Maybe we should leave," Dave said to me.
"Nope, we're not leaving," I said.
I figured that Max would calm down at some point. I tried talking to him some more. ROAR.
I don't usually blatantly ignore Max's wishes, but it was one of those times when it didn't seem fair to let one person in our family ruin it for everyone else. We'd been discussing attending the bar mitzvah for weeks, and Max had expressed some hesitation but ultimately agreed to go. I wanted him to understand that afternoon that he needed to think about other people—the boy whose bar mitzvah it was, his family and our family. Over the years, we have often left: the party, the museum, the event, the whatever when Max decided that he'd had enough. But that was when Max had major sensory issues. He handles loud music and parties just fine now...when he chooses to.
It was awful to see Max upset, and distressing to hear him yell. But if we'd given in, if we keep giving in, Max will never learn. It's a point comedian Zach Anner brought up when he was recently interviewed about his tips for raising children with disabilities. As he said, "Raise your kids to be considerate, thoughtful adults who aren't always the center of attention. When you have a disability, the world just sort of revolves around you, and getting used to that is dangerous. It breeds codependency, and sometimes, like a weird type of narcissism." Dave and I watched the video together, nodding the whole time. Yes. This.
Eventually, when Max realized we were staying put, he stopped roaring. He ate some food. He danced a bit. He gave a high-five to the bar mitzvah boy. We took family photos in the picture booth. He informed the people at our table that he was moving to Jamaica. (Yes, still his intent.)
Then Max got antsy about leaving again. We were all on the dance floor. I looked around at the other kids and families, and suddenly felt very alone in the crowd. I used to feel that way a lot when Max was little and we were at birthday parties or at the park, and I rarely do anymore. But that afternoon was hard.
A few minutes later, shortly before the party ended, we headed out. En route home, we talked with Max about his behavior. He was quiet, but we knew he understood.
The next day, he asked when we were next going to a bar mitzvah. It's actually Sabrina's, in March.
Max had one thing to say: He wanted to know if there would be mac 'n cheese.
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Ben's mini vibrating toothbrush broke the other day, tragic because one of his favorite activities is walking around and chewing on it. I had a cute Crayola one handy and gave it to him last night.
"No button!" he noticed as he examined it. Meaning, there was no button to turn it on.
"Broken!" he declared.
But soon enough, he started chewing on it, too.
It occurred to me that if he'd never had some fancypants baby toothbrush, he would have been perfectly content with the Crayola one. But then, he's two and he got over it pretty fast.
To me, most things in life are relative—a perspective that helps keep me grounded in every which way.g
Max used to have meltdowns when we went out to new restaurants. Now he has a habit of repeatedly saying "It's disgusting!" when he doesn't like where we go. It's annoying and rude (although others don't understand what he's saying). We're working with him on this, but compared to the screechfests we used to have to deal with, this is small potatoes. #relative
The train I take to commute to and from work sometimes gets delayed for no apparent reason. When it happens, I force myself to think back to this summer, when our train line was under repair and instead of one train I had to take two. Suddenly, the train delay's not so bad. #relative
Ben has this habit of announcing "No waaaaay!" lately when I ask him to do stuff. While this does not make life very easy, he is otherwise pretty sweet and far from some other terrible twos behavior I've witnessed like hitting or shoving other kids. #relative
I am in the middle of planning Sabrina's bat mitzvah, the coming of age ceremony for girls who turn 13. It's a lot to juggle. But as I'm ordering stuff, writing speeches, making lists and doing all the things, I pause to consider that when I was planning Max's bar mitzvah I had a three-month-old. And suddenly, it's easier. #relative
The corrective oral surgery we had for Max's drooling was not effective. Not one bit. He is OK with this; he's not particularly aware that he does it. At first, I was really disappointed; the drooling makes people stare and could one day get in the way of employment opps, and I was hoping for a permanent solution. Still, it's good that he has other options. There's another surgery he could go, a reversal of salivary glands, but first I need to do some serious research and make sure Max is game to try again. For now, we're going to use the scopolamine patch—the one used for motion sickness, worn behind one ear. It also decreases saliva. Years ago, this wasn't even an option for people with cerebral palsy. #relative
Whenever something's troubling or bugging me, I try to make it relative and it usually gives me a clearer, more optimistic take on things. To be sure, my relativity-o-meter doesn't work so well at 5:30 in the morning when Ben wakes up; yes I love this little guy to the moon and back and we're lucky to have him but 5-freaking-30 a.m. (He did not get the easy-third-child memo.) It also has no effect on worrying forward, like when I get anxious about what Max's work future might be.
But my theory of relativity often comes in handy for calming down. Try it! Or get your money back, guaranteed.
Max kept telling me something last night at bedtime, but I wasn't quite getting what he was saying—it was about going somewhere on Friday with Daddy. So I grabbed my phone and he typed it out: Home Depot.
Ah. He's mentioned going to HD o get moving boxes, because there's snow in this week's forecast and it has strengthened his resolve to move to Jamaica (just when I thought he was calming down about that).
For a couple of minutes, we practiced saying "home" and "depot." The words got a bit clearer, and we were both pleased. Progress! After years of working with Max on his speech, I know that every little bit counts. Tomorrow, his 'h' and 'd' might be hard to understand once again, but I'll take those bursts of clarity.
I heard an excellent relevant point the other day on a Dream Big episode: Practice does not make perfect, it makes progress. The precocious podcaster, 8-year-old Eva Karpman, noted that she'll never be perfect—but she wants to reach for her highest potential. (Eva's mom, Olga, joins the podcasts when she interviews guests). Yes, I thought: THIS.
Early on in Max's life, I despaired that he wasn't going to be the "perfect" child I'd imagined I'd have. As any parent of a child with disabilities knows, aching for your child to catch up with other children and ace milestones is a recipe for self-torture. As I've often said here, our children are on their own timelines, and nobody else's—but that's very hard to accept when you're a new special needs parent.
It's also hard to accept that every step forward is a step forward, a win in and of itself—and that there doesn't necessarily need to be a finish line, let alone a deadline. When Max was a little guy, I ached for him to talk. In my mind, that meant speech as a I knew it: verbal communication with clear-cut enunciation. Even as Max never babbled and struggled to say an "m" or an "oooh" as a tot, I still hoped for full-blown speech.
Although I was heartened by the gains—when he learned to say "no," when he started calling me "Ohmmy," the first time he said "I love you"—it was hard to fully savor the little advances when I always had the big win in mind. It's what we're taught as kids: Keep your eye on the prize. Never give up. Go for it. You can do it.
The truth is, it's a different story when you have a child with special needs. Try as he might, sounds and words can escape him. And try as you might as a parent, this is not in your control.
The passage of time was my teacher. Max, too. It became clear that he would have his own means of communicating, a package that consists of an iPad speech app, occasionally typing out words on other devices, gestures and spoken words. Not "perfect" by society's definition—but perfect for him. I no longer hope he'll talk like I do. He talks like Max. He makes his wants and needs and wishes fully known. The speech therapist will continue to encourage him to enunciate consonants and multi-syllable words. Dave and I will keep practicing with him. He will keep right on evolving. Perfect.
I realize this is all said in hindsight, and that when your child is very young it's hard to dull the yearning for him to do stuff and the pain you feel about the delays. Of course you want your child to achieve. But try your best to relish what a child can do, and not mourn what he can't. Savor those inchstones. The point of progress isn't perfection—it's achieving a personal best, whatever that means for your child...and you.
Sunday evening, Sabrina was roaming around the mall with friends and Dave took Max and Ben out for dinner. I had the house to myself. This was an incredible gift.
I love my family. I also seriously love being home alone. These things are not at all compatible.
Dave and the boys were only supposed to be gone for a bit while I christened our new Instant Pot. Except (true story!) I hadn't noticed that the pot roast recipe continued on the next page, and that it didn't take 30 minutes to make...it took nine hours. When I let Dave know, Ben was already hungry and he decided to just take them out to dinner. Squee!
I didn't dance around naked or take a bath or do anything particularly great while they were gone: I caught up on paperwork, organized a cupboard, ordered contact lenses online, sat at the kitchen table with an iced tea as I read the newspaper—including the magazine section.. And it was h-e-a-v-e-n. This was partly because I could do exactly what I wanted—nobody needed me to sign a form, retrieve the toy part that rolled under the sofa, get a snack, clean up the crumbs (well, technically, nobody ever cares if I do that but me), give them a ride, dash over to Staples for some essential item for a school project, get a glass of water, wipe a butt, whatever.
But most delicious of all was the the silence. Pure, unadulterated, blissful quiet, not one bit shattered by the sound of someone wailing because they bumped their head or butt or shrieking because someone else whomped their head or butt or whining that they were bored or shouting "Don't jump off the couch!!!" or screeching from the top of that he stairs: "MOMMY I ONLY HAVE ONE BASKETBALL SNEAKER DO YOU KNOW WHERE THE OTHER ONE IS?"
Ben wasn't running his vibrating toothbrush over furniture (a favorite activity!) or yelling cheerfully at the top of his lungs as he did laps around the first floor. Sabrina wasn't chatting with a friend on Facetime. Max wasn't watching YouTube videos of fire trucks. Dave wasn't obsessively listening to Jim Cramer rant and rave on Mad Money.
I never fully understood the phrase "I can barely hear myself think!" until I had a family. The volume of life at our home is always on high. When I'm in the thick of it, I never consider it. Then I get the house to myself every so often and I realize that what's missing from my existence is peace and quiet. Yes, it happens when all the kids are asleep at night, except by that point I'm too wiped out to appreciate it. I miss the kind that happens when it's morning or afternoon and you're sitting on the sofa with sunlight pouring in through the windows and the sound of silence envelops you and suddenly, you're calm.
To be sure: When I have the house to myself, there's nobody to give me hugs or kisses or make me laugh or say "I wuv you!" But I need this occasional time alone to regroup, regenerate and reboot.
They only called home once.
"What are you doing?" Dave asked.
"Nuking a bowl of udon noodles for dinner," I said.
"Rice! Rice!" Ben shouted in the background.
"We had sushi!" Max reported.
"That's great!" I responded. "Gotta go!"
And then, I hung up and returned to my life as a lady of leisure...at least for 18 more minutes.
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I dashed home from work recently to take Ben to a preschool party at our temple. Sabrina was at a basketball game, Dave had to work late, Max was hanging home with a sitter and it was just us two. The plan: Ben would sing songs with the other tots, then we'd all down treats.
I grabbed Ben and headed over. There were tons of kids there. Then the singing started; the twos class was slated to go last.
"Hey, Ben, want to sit and my lap and watch?" I asked.
"NO!" said he.
For the next twenty minutes, Ben zoomed up and down the rows of chairs. He refused to go on the podium and sing with the other kids from his class; instead, he ran around some more. Then it was time to eat. Then I needed a nap.
"Coooooooookies!" said Ben, hopefully.
But, nope: donuts. I let him try one and he liked it. Score! (Oh, what an outstanding mom I am.) He proceeded to spend the rest of the party pressing the water cooler tap, grudgingly letting other people take their turns. I was too tired to tussle with him about it. (See: "outstanding mom.")
"You need to get one of those at home!" a dad said, laughing.
"That would be my worst nightmare," I replied.
As I carried Ben to the car, he screeched "Water! Water!" because he'd left his new BFF the water cooler behind. Despite the commotion, I felt at peace. Sure, I'd missed out on seeing Ben sing with his friends. But among the many things raising Max has taught me is to let go of how activities with your child are "supposed" to be.
For years, Max didn't enjoy parties, children's events or restaurants. Dave and I struggled a lot with this. And then, we just went with it. We found one local eatery where he was comfortable, a greasy spoon with "wieners" in its name. Max only wanted to sit in the booth in the back, by the bathroom; we joked they should be a plaque there with his name on it. For the longest time, we were that restaurant's most faithful Sunday night customers. We stopped pressuring Max to go to parties, and instead we'd conquer and divide—either Dave or I would go with Sabrina, and then one of us would do something else with Max. We kept attempting to take him to new places, but if all he wanted to do at the children's museum was sit in the gigantic bus, train or fire truck, we were fine with that.
It took a long time for us to accept that we had to go with the flow. Once we did, I can't say that life was easy—when Max had public meltdowns, it was tough for us all—but at least our spirits weren't continuously crushed. Having overly high expectations of how your child will behave at, participate in or enjoy an activity is a recipe for double disaster. Because if he's not into it, and gets riled up, you're dealing with a distressed child along with your own disappointment.
There are all sorts of ways for our children to enjoy themselves; who cares if it's typical or not. At the party that night, Ben had his own kind of fun, and I got to chat with other parents here and there. Also: donuts!
Maybe next time he'll join in the singing. Maybe he won't.
We were in Jamaica at our hotel's coffee bar. Max had been scrolling the web on my iPhone for homes in Jamaica, given that he wanted to move there, and was pointing to his fantasy house. The lady in line behind us had, evidently, been observing us.
"Yes, he reads really well—right, Max?" I said.
"Yes!" Max answered.
I said this to her straight up, but my heart had taken a nose dive. It hurts when people are surprised by Max's abilities. Max doesn't seem to notice or mind, but to me it's a reminder of the perception obstacles he has to overcome in life. It's equally disheartening when people talk about Max as if he weren't there, yet another hurdle to contend with.
It's been my experience that people do not presume ability when they meet children or teens with disabilities—they presume only disability, in every which way. And so, they are often surprised when they notice what our children are capable of, even when they're doing basic stuff:
[At the pizza store, when Max pointed to a slice with ziti, from the guy behind the counter]: "I love how he knows what he wants!"
[At the park, when Max was holding onto Ben's hand, from a random nanny]: "Awww, he can still be a great big brother!"
[In the supermarket, when Max was wheeling a cart down the aisle, from an older lady]: "It's great that he knows his way around!"
To be sure, it's wonderful that Max does these things. I know just how far he's come from those dire doctor predictions in the NICU, and just how much effort has gone into certain accomplishments. I cheer him on when he so much as manipulates a door handle. But I'm his mom. These strangers who make remarks don't know anything about Max, just what they're seeing: a boy with disabilities going on about his life...and to them, that is remarkable.
Am I over-feeling this? Perhaps. It comes from a place of wanting people to take it for granted that kids and teens like Max have competency, strengths, talents, smarts—the entire human-being package. Of course, the comments are typically well-meaning. But they have the opposite effect of elevating Max: They make it clear how low some people set the bar for those with disabilities. And they're other-izing in that they treat people with disabilities as if they are an entirely different species.
Would you ever look at a stranger at Starbucks and say, "It is so impressive that you knew you wanted a grande!" Or, even weirder, would you turn to his partner and say, "It's really impressive that he knew he wanted a grande!"
Exactly. So what makes it OK for someone to comment on a person with disability ordering something, doing a chore, performing a task, or basically existing? And to talk about him instead of to him?
There's a double-edged sword of what I wish for: If I hope for Max to not understand the "Wow, you're actually capable of that!" underlying sentiment of these comments, and he doesn't, that means he wouldn't have achieved that level of cognition. If I wish for him to understand them, and he starts to, then perhaps they will pain him, too—although he could defend himself.
What I unequivocally wish for is for Max to go on about his life without narration from strangers. That's not happening anytime soon. So the best I can do for him, the best we can all do for our children, is to is to make our children part of the conversation when others talk around them. And we can help others see, in social media and our real-life circles, that disability is one part of who a person is, not the whole. And we can keep right on lifting our children up and cheering them on, so they're proud of themselves and have the confidence to contend with a world in which people don't always see them for who they are.
Max was plenty excited in the car ride yesterday to see Disney on Ice. He'd been wanting to see it and when my friend Peg reached out about going as a group, we were in. Then we got there and Max realized that we weren't going to be in a suite, and we had a stand-off in the lobby.
"Max, we have great seats," I said to him.
"Upstairs!" he said, where the suites are.
The last time he'd seen Disney on Ice, he'd gone courtesy of his old school. A benefactor had given the students suite access. And once you've had a taste of all-you-can-eat mac 'n cheese and cake, life at Disney on Ice is evidently all downhill after that.
I finally coaxed Max toward our seats.
"Upstairs!" he told the usher, hopefully, when she pointed them out to us. Nope.
After we carefully made it down the stairs and settled into our seats, the pouting continued.
"It's too loud for me here!" Max informed me.
Now, Max had major sensory issues when he was younger. While loud noise is still not pleasing to him, and I won't be escorting him to any rock concerts in the near future, the volume at your average show typically doesn't disturb him anymore. We've taken him to a bunch of performances in recent years, sans headphones, and he's been fine.
"Max, you're usually happy at shows!" I pointed out.
"No! Loud!" he said, and gestured upstairs.
He was playing up his sensory issues to get what he wanted, only I wasn't going to play along.
"Max, when you were little loud music bothered you, but you've changed," I said.
"Upstairs," said he. "Loud!"
He's a smart one, that Max. He doesn't usually do this sort of thing, other than when he tries to get Dave to feed him at dinner when we got out because he claims to be tired and he knows Marshmallow Daddy will likely give in.
Distraction helped. We scrolled through photos of our recent Jamaica vacation. Peg, her husband and son showed up. When Max kinda-sorta growled hello, I explained that he was disgruntled about not having a suite. Her husband joked about Max needing to sit among the plebeians. Soon the show started, and right away, Max was mesmerized.
He pretty much stayed that way for the entire show. One particular highlight: when the dad of a kid sitting near us took a little nap. Max thought that was hysterical.
When it was over, though, he wasn't going to admit how much he'd enjoyed it.
"Max, did you love it?" I asked.
"No!" he said, still not forgiving me for providing him with a suite experience.
"Max, thank Peggy for getting the tickets!" I said. He grumbled something that sounded like "thanks."
"Oh, yeah, blame me for not getting a suite!" Peg joked.
En route home, Max asked when we could go see Disney on Ice again.
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The reason Max now wants to move to Jamaica: Our amazing stay at the Hyatt Ziva Rose Hall resort in Montego Bay. Dave and I got some time to chill; Ben and Sabrina had their fill of water fun; we ate lots of good food, drank lots of good drinks and enjoyed some adventure; and in true teen style, Max decided to avoid us as much as possible and have the time of his life.
I was a bit concerned about squeezing into one room; by the time we booked, that was all we could get. But #1220 turned out to be pretty sizable, and recently renovated to boot, so we were content.
Our room, before the kids tossed their stuff everywhere
The view from our balcony. Our backyard would look ever so much nicer with a palm tree, I've realized.
Ben enjoying an afternoon drink (that would be soy milk) in the lobby
The grounds are gorgeous
The boys liked taking walks
Hyatt Ziva Rose Hall is an all-inclusive resort, which makes it a no-brainer for families and people who really like pina coladas. It's large, with 387 rooms and suites, but not too sprawling and it's flat so it's easy to get around and accessible; I spotted several guests in wheelchairs. I could not stop taking pictures of us on or by the beach; every one looked like a postcard.
See what I mean?
Most of our days there fell into a lovely lazy pattern: Wake up, hit coffee bar, snag poolside lounge chairs, breakfast buffet, pool, swim-up bar, lunch, more pool or beach, maybe do a sport or think about doing a sport or just give up and hit the pool (and swim-up bar) again, snack, shower, dinner, show, sleep.
One of the two humongous pools
The blow-up flamingos and swans were in hot demand, but if you asked a pool attendant to find one for you, they somehow always did. Sabrina loved singing "Old McDonald had a flamingo" to Ben....
...when she wasn't posing herself for artistic selfies in front of the ocean (or "onish," in Ben lingo).
That time I actually got to lie down and chill during the day and it didn't involve dental work
Pool bar, mon!
We'll have a virgin pina colada, please (and another and another and....). Ben started asking for them by name: "Ina ada."
Ben's favorite spot: the rinse-off area
If you notice there's not much of Max here, it's because he abandoned us. He loves going to kids' clubs. The one at Hyatt Ziva is for children ages 3 to 12. For youth with disabilities over age 12, parents can pay an hourly rate for a sitter. And so, Max had the company of several lovely, sunny ladies. They hung at the kids club, they took walks, they ate lunch and dinner together.
Clockwise from left: Ameika, Fiona and Sophie. Shout out to Velesha, the Kidz' Club supervisor, who regularly checked in to make sure Max was a happy camper.
Inside the Kidz Club
#LifeIsGood
Chilling again with a drink and a 'do courtesy of Ameika; after she did it once, Max insisted on wearing his hair like this every day. When in Jamaica....
Playing air hockey on the deck of the Kidz Club
There was plenty of fun to be had: a water balloon toss-off, bingo, a trivia game, dance lessons from the staff. The area for towel pickup had ping-pong tables, a bean-bag toss and a life-size version of Connect Four.
What he's thinking: Why don't we have one of these at home?
There are poolside spa treatments, including hair breading (Sabrina got a few) and massage (could he look any more relaxed)?!
Guests can rent one of the giant poolside beds and lounge away. (What I was thinking: Why don't we have one of these at home?)
Seriously, everywhere you walked there was someplace good to lie down
Water sports included boogie boarding, kayaking, standup paddle boarding and snorkeling, along with pool cycling classes and aqua aerobics.
Someone in our family had to exercise! The resort had a brand new gym, but we were too occupied by the lunch buffet to get there.
Sabrina and I both loved Catamaran sailing—the choppier the water, the better. (Don't be impressed, we didn't DIY; a staffer took us out.)
For our family, eating is a sport and this place was like the food Olympics. There were Caribbean, Italian, Asian and French restaurants, the Barefoot Jerkz beachside shack with outstanding jerk chicken, a Brazilian churrascaria, a sports bar with casual food, a deli cafe with pastries and other treats, a 24-hour coffee shop and room service—and that's just on the Ziva side. Over at the sister adults-only property next door, Zilara, there were a couple more restaurants plus a lunchtime crepe stand.
The food was consistently delish. And if there's something special you're craving, they will gladly make it for you. On our first morning there, a chef saw Max getting upset—he wanted his usual chive cream cheese on a bagel. So he made him some, and every morning after that made sure Max had it. Sabrina, meanwhile, has a thing for corned beef hash. Once the chef knew that, he prepared it for her daily, too.
The salad bar at Choicez
Of course there was excellent Jamaican cuisine: ackee and saltfish, beef stew, chicken and beef Jamaican patties, plantains, bammy (a traditional flatbread) and the best-tasting rice I've ever had.
Ordering his daily omelet from Chevoy
As typically happens on vacation, Max broke out and did something new, this time carrying a plate to the table on his own.
My snapper at our Calpyzo Grill dinner came with a side of gratitude
One afternoon, we were treated to a chocolate tasting with the Wouter Tjeertes, the resort's very cool pastry chef and resident chocologist. How genius is this guy? Well, this is his handiwork:
The Chocolate Thinker
As Ben munched on white chocolate, Wouter—who's from the Netherlands—tempered the chocolate, a key technique for heating and cooling it so it doesn't congeal with lumps. You get a smooth, silky liquid that's perfect for dipping or creating bars. Chocolate with lots of cocoa butter is best. Sabrina did the stirring, working off all the corned-beef hash calories. (Not.)
Then we plunked bits of marshmallow and fruit in and packed some into the molds with a metal spatula. (Fun fact from Wouter: Those plastic tops for tin Chinese and takeout food containers are great for chocolate molds.)
Our handiwork. On vacation, it is perfectly acceptable to eat chocolate bars for breakfast. It may even be a rule, actually.
I can't say enough about how warm and welcoming the staff at the hotel is. When they said hello, they put one hand over their heart. Within a few days of our arrival, they were greeting us by name. And by the time we left, somehow everyone knew Max. Our package included butler service, and Gary, Chiara and Latoya were just one call away for anything, whether we needed activity information, a picnic lunch or an umbrella in case of rain.
One night, we came back to our room and found this creations from Chiara. Think I can train the kids to do it for me at home?
The landscapers gladly cut down a coconut for you if you asked
Sometimes we got lifts, much to Max's delight
It was hard to tear ourselves away from the Hyatt Ziva, but one day we took a quick tour of Montego Bay, including a stop at the St. James market.
We bought coconuts and sugar cane from the lovely Nardia.
Montego Bay
Another day, we headed out with Island Routes Caribbean Adventures, the leading tour operator in the area. Destination: dolphins, at Dolphin Cove in Lucea, courtesy of the company. First up, they put on a bit of a show.
Next, we hung with them. What that meant: A group of us lined up on a platform in knee-deep water in a natural lagoon as we watched the dolphins, touched them and interacted with them. Dave had to hold Max tight as the platform was a bit slippery, but Max was too mesmerized by the dolphins to notice. Along the way a trainer shared trivia, including the fact that dolphins' echolocation (they emit sounds and listen to the echoes) can detect when a woman is pregnant. They cannot, however, detect when you have too much pina colada in your belly.
Max, Ben and me did the Dolphin Encounter, which meant we got to touch and kiss them.
Ben liked watching but was a bit unsure about the smooch.
Dave and Sabrina did the Ultimate Dolphin Swim. Separately, each swam out dozens of feet into the lagoon and then held onto two dolphins fins to be pulled back to land. I don't think I've seen Sabrina this excited since she got her own phone.
Next, Sabrina and the dolphins glided together in the water as she did a foot-push and stood up. Afterward, we headed over to the stingray pool for more mingling. All in all, it was one seriously memorable experience.
Nighttime at the hotel's entertainment area regularly brought more fun. There were games for families, kids and parents who got called on stage, along with pro dancing.
The Michael Jackson show had outstanding dancing, but I also loved the pre-show when the MC called up 15 random guys from the audience and got them to dance.
One night, we were invited to dinner on the beach with a memorable performance featuring traditional Jamaican music, acrobatics and feats. Yes, this is a man balancing a machete on his forehead.
One highlight of Max's stay: the kid talent show. He sang Let It Go, accompanied by a young woman with disabilities he'd met the day before. Max let her sing first, then joined in at the end.
Although technically Max was the only one who cried when it was time to go home, we all felt the same. The Hyatt Ziva is a hard place to leave. At work a couple days later, I was still half expecting someone to walk over to my desk and hand me a pina colada.
