Monday, March 1, 2021

Best back-to-school day ever

Max returned to in-person learning at school this morning after a year of being out. He had some of the usual back-to-school excitement, and some hesitation. Me, I had All The Feelings.

Max has always enjoyed school. He's been doing fine with virtual learning, and his school did a great job of putting together work skill kits he could practice with at home. But now that he's fully vaccinated, Dave and I felt it was time for him to be back socializing with classmates, getting in-person physical, occupational and speech therapy and doing his work skills live. There would only be seven other students in the class. We were OK with the bus, too—there would be only one other student on it. 

Max started  expressing some reservations this past week. Yesterday afternoon, he burst into tears. 

"It's not safe!" he insisted, and my heart sunk. 

Transitions have never been easy for him. Like all of us, Max had settled into a routine at home. And so, after months and months of making it clear to Max that we were quarantining to stay safe, we had to convince him that going to school was safe. We spoke about how the vaccine would protect him from getting very sick, and that he'd be wearing a mask to protect himself and so would everyone else at school. We told him that the awesome bus driver he'd had for the last several years would be back, and that there would be only one other student on the bus. We reminded him that he would finally get to meet his amazing teacher, see his old friends and make new ones. 

We had to convince ourselves, too. I've read up on the research on  the low risk of Covid transmission in schools. Anecdotally, I have heard the same from friends who have kept their kids in school. Still, it was a big mind-shift for us all. We have no regrets about keeping Max home since September, even though his school building was open—he is high risk for complications. But the vaccine changes everything. Sabrina is going back to school this week. So is Ben.

Max listened to us. He calmed down. Then he smiled and said, "Suit!" 

He was joking that he wanted to wear a suit for his first day of school. 

We prepared for his return by staying up too late (Max) and doing all of the forms at the very last minute (me) because: some things never change. Max picked out an outfit—his favorite Los Angeles sweatshirt and navy blue sweatpants. And we did his homework together, a video recording of how he spent his weekend. Max enjoyed reeling off the foods he'd eaten (sushi, ice-cream, spinach pie).

When my children have returned to school in September, it's always felt like a fresh start and a relief. Today, I felt like a whole other kind of fresh start and relief: We have made it through a full year of at-home learning (and at-home everything). Max going to school was the first normal thing that's happened to our family. 

After Max had breakfast this morning, he got out the plastic stand that he uses to prop up his iPad and put it on the kitchen table. It was a total "Maybe I can stay home?" play. But then, once his jacket was on, he kept looking out the window for the school bus. Never in my life have I been so happy to see that bus pulling up to our home. It was as if it had never gone away. 

We walked Max down the steps and he headed over to the bus with a huge grin. I chatted with his driver for a bit, so thrilled to see her, and said hi to the new aide. Then Dave and I stood there and watched it head off. 

"It's hard to believe it's been a year," he said.

"I know," I said.

The kitchen table looked bare without Max sitting there. The kitchen felt so quiet without listening to him talk with his teacher. 

It felt weird.

And all kinds of wonderful. 

Friday, February 26, 2021

The Disability Blogger Weekend Link-up is up and at 'em


What to do if you're new  

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Like this: And then he decided he wants to drive

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Thursday, February 25, 2021

Very impressive use of emoji

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:

And I know, it was so wrong and I have all the respect and admiration for his therapists, but I could not stop laughing. 

Max seemed to have mastered emoji. Not only had he chosen a sad face, it was the one that had that "my bad" connotation. And juxtaposed with that was his victorious "ha ha." Also inappropriate. But. 

This was less funny when I later found out that he had not actually emailed his PT, so we had a long discussion about his therapists, how great they are and how they count on him to show up—and why he needs to count on them, too. 

But:




Monday, February 22, 2021

And then he decided he wants to drive

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. 

Friday, February 19, 2021

The Disability Blogger Weekend Link-up is here for you, once again


What to do if you're new  

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Like this: What I'll never forget about the pandemic (in a good way)

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Tuesday, February 16, 2021

What I'll never forget about the pandemic (in a good way)


"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Lately I've been thinking about Maya Angelou's famous words, and how they relate to the pandemic. While the tragedy of it will never be forgotten, I am hoping that the anxiety, monotony and yearning for a return to some sort of normal are not what will stick with me or the kids. I am also hoping to repress the fact that we let the kids have eleventy billion hours of screen time. But I am betting that the ways in which our family, friends, neighbors and even strangers have made all of us feel good will be what we remember, in years to come. 

What's on my list:

• The boys' bliss during their weekend sleepover parties with Dave in our basement, aka their getaways.

• The spirit boosts of zooming with people at work and friends on Saturday nights. Shout out to my pals Hedy, Wendy, Betsy and Paola even if I don't someday recall what, exactly, we spoke about. Although maybe I won't forget just how much we obsessed over wiping down our groceries, but already that seems a long time ago.

• How amazing it felt to cut my mother's hair. Mom being Mom, she told me it was her best one ever.

• Max Zoom dancing with his class.



• Neighbors coming to each others' rescue last spring by buying groceries and food when it was impossible to get delivery slots. And that one time a neighbor who knew I loved Trader Joe's alstroemeria (they come in gorgeous colors and last for two weeks) bought me some.

• What an awesome big sister Sabrina has been to Ben.


• The extreme dedication of the teachers and therapists as my children learned virtually, their creativity at keeping them engaged and how lucky I felt to have them in our lives. 


• The Zooms our Girl Scout troop organized with children and teens with disabilities and how much fun everyone had.

• My sister's regular are-you-OK text check-ins.

• Dave, aka DaveDash, walking up the stairs to bring me lunch as I sat in our attic and worked. 

• 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.

Friday, February 12, 2021

The Disability Blogger Weekend Link-up is hosting your posts


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Thursday, February 11, 2021

Getting a Covid vaccine shouldn't feel like winning the lottery, but it does

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. 

Tuesday, February 9, 2021

Parent time warp meets pandemic time warp

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.  


He even spelled his name. I mean, n's are hard!

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.

Friday, February 5, 2021

The Disability Blogger Weekend Link-up: Is it spring yet?


What to do if you're new  

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Like this: Love That Max: Max advocates for himself by text

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Thursday, February 4, 2021

Nike debuts a hands-free sneaker

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.).

You can see a video of how how the sneaker works on Nike's press-release page.

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. 

Wednesday, February 3, 2021

In which Max advocates for himself by text

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."


Max is really good at spelling. His mixed use of upper and lowercase remains a mystery, but, whatever! Poetic license. 

I appreciated that Max was being responsible about wearing a jacket and hat. But it was frigid out. So I did what any good parent would do: deflected to the other parent. I pulled over and responded, 


Max continued: I want air, OK, I wear winter hat, I'm bored inside. 


Not once have I ever heard Max express that he was bored—this was progress, although the sad kind. Pandemic boredom in our house has reached all-time highs as of late. The phrase "I want air" also stood out. It is hardly surprising that he wanted that, but it was stupendous that he said it.

Still: The real-feel outside was below zero. So I said,


And Max, in an admirable show of advocacy, would not let it go:



Max had switched gears, and decided that instead of taking a walk, he wanted an ice-cream run. (To Max, any weather is ice-cream weather.) 

Meanwhile, I had been processing all of this and decided that if Max really bundled up, going outside would be OK and good for him.


In the end, he and Dave ended up going for a drive or a change of scenery And that evening, they got ice-cream.  

On the surface, this was just a little text exchange, but it says so much about how far Max has come and his ability to advocate for himself. 

There are doctors, specialists, therapists and even educators who will tell you that the potential for progress as children with disabilities get older peters out.   

Don't you believe them.

Monday, February 1, 2021

Models with Down syndrome on magazine covers: yeah!

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.



And now, the 19-year-old has done it again: a cover on Mexican Elle and a fashion spread inside the magazine. Ellie worked it as glamorously and gorgeously as any model. (Interesting choice on the kabuki-style makeup, eh?) 



I'll say what I always do: Maybe someday, it won't be news when a beautiful woman who has Down syndrome appears in a magazine because it will just be a normal thing. But here I am, thrilled to see Ellie and thrilled to spread the word. 

Friday, January 29, 2021

The Disability Blogger Weekend Link-up: contactless connections right here


What to do if you're new  

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Like this: Love That Max: An extra-sweet sixteen

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

Wednesday, January 27, 2021

An extra-sweet sixteen


Sabrina turns sixteen this week and, once again, I don't understand how my children keep getting older even though I'm not. !!! More than anything, she wanted to see her friends in person—she's been learning remotely since September. And so, outdoors-in-the-freezing-cold-socially-distant-party it was on Sunday. And it couldn't have been more Sabrina. 

Max decided he was having none of that girly hoopla and retreated to his grandparents' house. Could he have been a tad jealous? Lately, he has taken to chanting, "HA HA I'M EIGHTEEN! YOU'RE SIXTEEN!"

Sabrina wanted a pink theme. She has an amazing eye for design, and picked out a gorgeous flowery backdrop for photos and pretty vintage-y paper goods on Amazon. She asked for pink rock candy and pink M&Ms. The rest was up to me, and I was determined to give her the great time she deserved. 

I crowdsourced on Facebook and found Doughnut Evolution, a gourmet donut company that would set up a tent on our driveway and dole out deliciousness. 

An amazing local mom who runs Purple Door Designs with her mother generously offered to customize throws for the girls. (Mallary, there aren't enough thanks in the world for that.) 

We have a firepit. One neighbor lent me another. A different neighbor dropped off a heater to keep on our deck. 

Dave ordered a sushi platter (Sabrina's favorite food) and pizza.  

The M&Ms never arrived, but happily it's Valentine season and Saturday night I ordered bags of Valentine M&Ms for curbside pickup at Target, then spent a half hour picking out the red ones to stick with her pink theme. That's love. 

She WAS going to wear her pretty little summery dress and who was I to tell her any differently? (Eventually she put on a pair of fleece pants.)


Ben: "When are the donuts coming?" (Repeat 500 times.)

Photo opp! (Repeat 500 times.)

Six feet apart, but totally together

Hand-selected M&Ms taste even better. OK, not really.

Hand warmers in a cupcake stand: what a treat.

Winter? What winter? 

Maybe the most beautiful driveway sight I have ever seen


Birthday cake donut

S'mores donut


Chef Dave made the donuts in a Krups fryer and his helper, Ella, put on the toppings. To sweeten the deal, there was hot cocoa, too. I still haven't come down from my sugar high.

Couldn't resist

I thought it went really well. But I knew it when Sabrina gave me a heartfelt thanks, and grinned for the rest of the day. Which made me really, really happy. WIN.  


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