I can say, with certainty, that Max learning how to use emoji was never on my wish list. It hadn't even crossed my mind that it was something he didn't know how to do or think to do. I am long past worrying about the no-can-dos and obsessing about the when-can-dos. But Max keeps right on showing us that there are no limits on progress. And as always, even the little things mean a lot.
Perhaps you heard me cracking up the other day? I was in my attic, working, when I got a text from Max. He and Dave had been out on an errand, and he informed me that he couldn't do PT because he had to eat lunch. Eating out with Dave (or, rather, going to drive-thrus or doing takeout) is one of Max's favorite activities.
Back in September, we discovered that Max had taken it upon himself to cancel a session with his school physical therapist because he wanted to go to the park. This was definitely a new level of independence, though we had a talk about it. Since then, however, he's done his best to weasel out of sessions several times, typically by texting me.
I was floored by the emoji—I'd never seen him use one before. Smartypants had picked them up from texting with me, Dave and family. (Shout out to Dave's friends Jeff and Big Ben, his fave texting buddies.)
I gave him a brief response: "No we can't cancel" and returned to work.
Ten minutes later, another text arrived:
As of a couple of years ago, Max wasn't interested in learning how to drive. As of late, oh yes, he does. There is definitely some sibling rivalry happening, because Sabrina is about to start taking driving lessons. But this is also a part of Max's burgeoning independence and perhaps he is ever so slightly tired of us after a year of pandemic quarantining and just wants his freedom. Can't blame him there.
Dave has been doing this slightly unnerving thing of letting Max help steer, and I am the cliched backseat driver. Disclaimer: Do not try this at home.
I was talking about Max and driving with my sister-in-law yesterday, who had the excellent idea of seeing whether we could rent one of those driver ed cars. I started googling and discovered the existence of certified driver rehabilitation specialists, who figure out solutions for drivers with disabilities. I searched the member directory at The Association for Driver Rehabilitation Specialists, found a few at a local rehab center (they're all occupational therapists) and reached out to one I looked up on LinkedIn because she looked friendly and because my Spidey senses said she might be game to figure out a lesson plan for Max and how he can get a learner's permit.
I mean, Max started driving bumper cars on his own back in 2014 and he's good at it. That's gotta mean something, right?!
Yeah, I miss those cheeks too.
I haven't yet discovered much research online. An article on developmental disabilities and drivers from Children's Hospital in Philadelphia was pretty discouraging (if realistic), noting that everything from reaction times to judgment calls can pose challenges for young adults with neurodevelopmental differences. One study that examined 609 youth with autism in New Jersey found that fewer than one third of them got a driver's license, versus 83% of other adolescents. Again, not surprising.
But then, studies don't tell you what's possible when you have a determined son and an equally determined set of parents. I have a feeling that way or another, Max will be hitting the road.
• Max Zoom dancing with his class.
• My gratitude for the mask and sanitizing-product help I've gotten—from our forever thoughtful friend Mike; from the woman I connected with in a local Facebook group who kindly made our family masks; from the lady who made me one out of a treasured old Lilly Pulitzer dress; from the stranger who gave me Lysol wipes at the beginning of the pandemic.
• Max's glee about his Saturday morning yoga sessions with my sister-in-law, Em and how he looked forward to them all week.
• The boys sitting in my in-laws' garage and getting haircuts.
• That one time the Target delivery guy told me the iced coffee I ordered was not available and when I informed him that iced coffee is to me like blood is to vampires, tracked down some in the back of the store.
• The people who showed up on our front porch: Max's therapists; my friend Laura, an event planner who helped with Max's bar mitzvah and Sabrina's bat mitzvah and who brought dahlias for me when I commented on how pretty the ones she posted on Insta were (I burst into tears); the Friendship Circle, dropping off care packages and activities.
• Ben's October pandemic birthday party, Max's December pandemic birthday party with classmates, Sabrina's January pandemic Sweet 16. We all needed those celebrations, and the reminder that life goes on.
Try putting your own list together. I promise, it'll make you feel good.
I'm not sure what's happening in your area but in ours, getting a vaccine appointment feels like winning the lottery. Max finally had his turn. He was seriously excited, especially because he knows that once he's fully vaccinated he can return to school.
At the start of the pandemic, doctors told us that Max wasn't at high-risk for complications from Covid-19, mainly since he did hadn't had a previous illness that compromised his lungs. The main concern for him was the lack of in-person therapy. Still, I worried—there was so much unknown about the coronavirus. As more information emerged, it became alarmingly clear that Max was at high risk. People with cerebral palsy have difficulty with muscle movement, which meant that there could come a point where breathing—which involves muscles of the diaphragm and lungs—could become acutely difficult for him. (This article from the Cerebral Palsy Alliance has good information on the risk for people with CP.) It also emerged that blood clots were a side effect of Covid-19, and Max has a condition that puts him at more risk for them.
News also came out that people with intellectual disability were three times more likely to die of complications from the coronavirus, although the key reasons—people with ID were more likely to have chronic health conditions, live in group homes, be employed in essential services, and rely on public transportation—did not apply to Max.
There are so many tragedies in this pandemic: the 2.35 million deaths worldwide and counting; the ongoing complications people, aka those poor long haulers, are experiencing; the financial devastation happening among the most needy people in our country; the social isolation our children are experiencing, especially acute for children and teens with special needs who were already isolated to start with; the toll this has taken on parents; the impact on small businesses. It's tragic, too, that as the push was made to come up with vaccines, test them, approve them and produce them, systems weren't simultaneously being put in place to dole them out. Instead, it's like the Wild West out there, with so many people unclear on how to get vaccines or unable to get access to them.
Getting a lifesaving vaccine shouldn't feel like winning the lottery, but right now, it does.
We registered Max on as many sites within our state as we could—some didn't specify that you had to be local—and got fortunate. Max had some arm numbness, nothing more. (In case you're wondering, they don't automatically ask guys to take off their shirts but Max insisted on wearing his beloved over-washed, too-tight Los Angeles sweatshirt and the nurse couldn't get to his upper arm so off it came.) Last week, my sister got lucky on a drugstore website at midnight and scored a vaccine for Mom.
I am wishing you every one of you luck with vaccinating the high-risk and elderly members of your family, and hoping beyond hope that systems improve.
As we head toward the year mark of our pandemic quarantine, it's still hard to believe all those months have gone by. It feels like we've been suspended in some sort of alterna-time form. Combine that with the fact that children have a way of making you acutely aware of the passage of time and it's enough to make your head explode, which is what happened this weekend.
First, I took Sabrina out driving. Dave had already had the, er, pleasure and it was my turn. I was wary because the roads were caked with snow. Also: It made me feel kinda ancient since I could recall my dad taking me out for practice runs. How did I have a daughter old enough to drive?! Sabrina did well and seemed calm and in control, which is more than I can say for myself. I gripped the seat and, once, screeched "YOU'RE ABOUT TO HIT A SNOW BANK!!!"
The very next day, Ben had a screening for getting into kindergarten. Kindergarten! Hadn't he just been learning to pick up Cheerios with his pudgy little fingers? Ben was nonplussed, and answered nearly all the questions correctly—where he lived, shapes, capital letters, sounds of words, counting. When confronted with a subtraction equation he wasn't familiar with, he charmingly talked his way out of it by commenting on the numbers.
Ben has been obsessed with a Netflix program called Barbie Life in the Dreamhouse, and the other night I overheard him saying "That is sooooo last season" to his dolls. I'd told my friends Hedy and Wendy this during our Saturday night Zoom, and they'd fervently hoped that he might express that during his screening. He did not, although he did offer bonus bits of information such as "When the coronavirus is over, I can kiss on the lips!"
To top things off, on Sunday night Dave called from his mom's place; he and Max had gone there to watch the Super Bowl.
"Max is drinking beer!" he announced. He put Max on speakerphone.
"MAX! You're drinking beer?!" I asked.
"YES!" Max confirmed, happily.
To sum up: In the course of one weekend, one teen got into driving; one teen got into beer; and one kid got ready to enter kindergarten.
The pandemic may make us feel like we're all stagnating, but life: It goes on.
Nike's done it again for people with disabilities, this time coming out with a hands-free sneaker. I'm legit excited. Max hasn't yet been able to manipulate a sneaker on his own, but this one could do the trick.
Some of you may recall that Nike's foray into adaptive sneakers started when a high-school junior in Florida with cerebral palsy sent the company a letter about the challenges he had tying his shoes. Nike created specially-engineered shoes just for him. That was back in 2012; three years later came FlyEase, sneakers with a wrap-around zipper solution on the back that made it possible to slide a foot in and out.
Max has had a pair of FlyEase, and he thought they were cool. He's now into Easy Slip Chucks, which open at the heel and attach with Velcro, though we have to give him a hand with them. He wears custom foot inserts inside for stability.
And now there's GO FlyEase, which allow users to slip into shoes without a single adjustment or closure. A bi-stable hinge allows the shoe to stay open when someone inserts their foot, and stay fully secured when closed. It's unclear on whether they will, however, fit foot braces. (In our experience, some extra-wide sneakers can do the trick, if the insole is removed.).
At $120, though, these sneakers are pricey—and may therefore be inaccessible to some people. It remains to be seen whether they will be available in extra-wide sizes that can accommodate orthotics. They'll be available on nike.com to members starting February 15, and more broadly available in the spring. I assume that at some point, there will be children's sizes, too.
"Usually I spend so much time to get in my shoes," Paralympic champion Bebe Vio said. With the new sneakers, "I just ned to put my feet in and jump on it."
Jumping into anything isn't exactly Max's thing, but I can see him being able to handle these sneakers on his own if he has holding onto a chair or the wall for support when he slips them on and off. And that, friends, would be another big step toward independence.
Max is a pretty comprehensive communicator these days. Articulating consonants remains a challenge, though I have increasingly been hearing "b's" and initial and final m's, d's and g's are also getting clearer. He regularly emails his therapists at school; most recently, he apologized to his PT for accidentally missing an appointment. On occasion, he has taken it upon himself to cancel a session. He especially enjoys calling his grandparents.
Max is also, like any teen, a frequent texter. His Apple Watch has been a game-changer. While he can't grasp a phone and text, he has done so from day one of owning the watch: with my sister, Judy; with his Aunt Em, who teaches him yoga; with Dave, his bff, all day long. Some nights, Max is downstairs in the basement (aka the Max Cave) and he'll text Dave to bring him apple cider. Yes, room service is available in our house.
I had a recent exchange with Max that really wowed me, because I could see the progress he's made with expressing himself and advocating for himself. As parents of children with disabilities, we are often hyper-focused on making sure their needs are taken care of and enabling them to do their best with talking, moving, learning, all of it. But as your child gets older, you realize that what's just as important is helping them learn to ask for what they need. Because that fosters independence, and because we won't always be there for them.
I was driving in my car, out on an errand, when Max texted: "I'm going to walk outside, wear jacket, hat."
I can count on one hand the number of times I've seen models with disabilities in fashion magazines, though this weekend I was happy to spot Ellie Goldstein on the cover of the Mexican edition of Elle when my friend Patty shared the cover on Facebook.
A too-brief history: In 2018, Teen Vogue released three covers of its September issue—one with model and champion gymnast Chelsea Werner, who has Down syndrome; one with Mama Cax, an advocate and amputee; and one with Jillian Mercado, an actress and model who has muscular dystrophy.
British model Ellie Goldstein broke new ground last year when she appeared in a Gucci mascara campaign and on the cover of the December digital edition of Allure.
