Friday, April 9, 2021

The Disability Blogger Weekend Link-up: Come on in!


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Wednesday, April 7, 2021

An acceptance letter for an amazing 18-year-old not going to college

April 7, 2021

Dear Max,

Congratulations! On behalf of the Office of Admissions (aka your parents), it is with great pleasure that we acknowledge your admission to the School of Life. Your exemplary academic record, developmental accomplishments and personal strengths have been thoroughly reviewed, and we enthusiastically welcome you.

As we continue to hear from friends about the colleges their teens have gotten into, as we see the exuberant Facebook and Instagram posts with grinning young adults holding up acceptance letters and wearing sweatshirts from their intended universities, we are thinking of you. At 18 years old, next year you will be in the same school that you have been in for the past four years, as your program continues until age 21.

But even if you are not off to college next year, even if you are unaware that you are missing a typical rite of passage, you deserve praise and kudos, too. As parents everywhere celebrate their high school seniors, we would like to take this opportunity to openly boast, toast and revel in you.

Your accomplishments and achievements in the face of challenges have convinced everyone who knows you that you have the brightness, determination and perseverance to flourish in the School of Life. Although there is no standardized test for emotional intelligence, if there were you'd score through the roof. Although there is no ranking for qualities like charm, cheer, affability and good humor, if there were, you would be valedictorian—your scores for the SAT (Spirit Aptitude Test) are remarkable.  These traits will get you everywhere, and continue to ensure your success in the School of Life. 

We would also like to commend you for opening up a whole new world to us and everyone who knows you. When we first learned that we would have a child with disabilities, we were so fearful of what the future held for you. But you have been a trailblazer in our mindsets, showing us the ability in disability and that there is no "right" way of doing things. You have proven top experts wrong, including the speech therapist who felt that your potential was tapped out at the age of 12 and the neonatologist who examined two-month-old you and announced, "His future looks ominous." 

Well, look at you now, Max. LOOK. AT. YOU. NOW. 

We know that following a different path is just that—not a lesser path, a different path. One that can be equally wonderful as the traditional one. And may we digress and say: Typical is overrated. 

You have been quite the innovator. You were literally the first person at school years ago to try an iPad and a speech app, and your technological prowess has exended to texting us from your phone and Apple watch to ask about moving to Los Angeles and whether we can go out for a steak dinner. You have mastered emoji. You have also aced some unique milestones, including the "ock you" one and cancelling therapy appointments on your own without letting us know. Ahem.

We have been duly impressed by your passion projects, including your plot to get us to move to warm and sunny Los Angeles, to become a firefighter, to set the world record for watching fire truck videos on YouTube, to paint our house fire-engine red (sorry, not happening), to relentlessly tease your little brother but also make sure he doesn't do stupid things like jump off the deck railing and to eat steak and sushi as often as possible.

While we, the committee, may admittedly lack objectivity, your admission is also based on recommendations from many, many teachers and therapists. The elementary-school teacher who called you "Smart Guy" to the point where you started referring to yourself that way. The music therapist you never fail to delight when the two of you make up songs about moving to Los Angeles. The therapists who, since you were a tot, have been awed by your fierceness—from the day you commando crawled, dragging your body across the floor when your little arms and knees were not yet able to hold you up to your ever-evolving progress for articulating words. The IEP meetings filled with phrases like "He is the mayor of the school!" and "I wish we could package what he has" and "You don't have anything to worry about." The neurologist we met with after your stem-cell infusion at Duke University who said, "I can see the light in his eyes."

Perhaps you will still go to college. Among many things, you have taught us that you never can tell what the future holds, and sometimes that's a very good thing. Your capabilities are great, limited only by stereotypes, dated perceptions and inflexibility. You have become an admirable advocate for yourself. Your independence continues to flourish, even if the committee member known as your mother does get a wee bit nervous at times about that.

In making our admission decision to the School of Life, we firmly believe that you will continue to make important contributions in the upcoming years—to your family, to your school, to your community and beyond. 

You should be very proud of your accomplishments, Max. We, the committee, certainly are.

We will be in touch about next steps. (Although they do not include moving to Los Angeles.)

With love and great respect,

The School of Life Office of Admissions  
(Mommy and Daddy)

Friday, April 2, 2021

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


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Thursday, April 1, 2021

Max is digging '70s music and other stuff you maybe never expected about your child

Weeks ago, Dave and Max were driving around and the Electric Lights Orchestra song Livin' Thing came on. For the uninitiated, ELO was a hot '70s British band, and yes, Dave likes to drive around listening to '70s music. He sang the song out loud, and Max was hooked. 

Ever since, Max has insisted on playing the song regularly. He watches groovy YouTube videos of it. He asked his music therapy teacher to play it on her guitar so he could sing it with her. It's gotten to the point where Dave took everyone out for ice-cream a few weeks ago and when they arrived home Ben and Sabrina leaped out of the car and simultaneously screeched, "WE ARE NOT LISTENING TO THAT SONG ANYMORE!"


Dave is tickled that Max is into music that he loves. It's one really fun part about having children: introducing them to the same stuff you liked when you were young. That pained me when Max was little, because it seemed like we were all missing out. Max and Dave didn't get to play sports the way dads and other boys did. I couldn't take Max to movies or shows because of sensory overload. We couldn't play board games with him (he didn't have the attention span), give him candy (he couldn't chew it), or teach him how to climb the money bars at the park.

Eventually, things shifted, including our mindsets. Maybe there was stuff from our own childhoods that Max couldn't experience, but then, this was a kid who did not lack for interests or passions. He adored the color purple, The Wiggles, DVDs about trains and planes, this one toy that involved pop-up balls, and the list went on. He relished school, his teachers and his classmates. He found his own unique joys, from going through car washes to visiting fire stations.  

The other shift that happened was: Max. As his physical and cognitive skills evolved, his world opened up. He learned to ride an adaptive bicycle and cruised around our neighborhood like any kid. He played on an adaptive softball team. He had adaptive bowling birthday parties. His sensory issues dwindled and he grew to love going to movies and shows. Traveling, too, one of my longtime passions. When we went to London two years ago, Max helped me pick out places to visit and of course it didn't turn out as planned but it was still a blast. 

In recent years, he and Dave have become the best of eating buddies, eager to experience new restaurants together and explore new neighborhoods while they're at it. Max is a sushi eating machine, which isn't cheap but is a thrill because it's Dave's favorite food.  

Max's life hasn't been lacking because of his disabilities—it's life as he knows it, and it's pretty darn great. It just took a while for us to understand that. 

It's a livin' thing.

Monday, March 29, 2021

He is so over my parental anxiety

"Max, you know to look both ways when you cross the street, right?"

Max sat in the passenger seat and stared stonily ahead, ignoring me. At his request, I was driving him to the fire station—his favorite place in town—so he could walk home from there. He'd done it once before, in October. There's a big intersection he has to cross on the way home, and it worries me. 

"C'mon, Max, answer me. You're going to look both ways, right?"

Max stared at me.

"Si!" he said.

I burst out laughing, and so did he.

"OK, Max, just be really careful about looking for cars when you cross that big street.

He didn't answer. 

Letting your adult child with disabilities grow into independence is partly a matter of their maturity, and partly a matter of your own. Max is sensible. He knows his way around the neighborhood. In fact, neighbors look out for him. Still, parental anxiety gets the best of me, especially my concern that he could trip and fall. Max is steady on his feet but it happens on occasion, when pavement is uneven.

"Hey, Max, what's your address?

 Max gave me another look.

"Los Angeles!" he said.

Again, I cracked up. He was mocking my anxiety, and really, who could blame him? 

I talked a little bit more about how cars sometimes speed through that intersection as he pretended not to listen, though I knew he was. I let him out of the car at the fire station, waved goodbye, took off and watched him IN my rearview mirror until I couldn't see him anymore.

A half hour went by. Forty-five minutes. I called his Apple watch; no response. I was about to get in the car when he showed up at our doorstep. He'd taken the long way home.

"Mommy! I want to take another walk!" he said after he used the bathroom.

"OK, see you soon," I said. 

I watched him head down our front steps, and I tried to let go.

Friday, March 26, 2021

The Disability Blogger Weekend Link-up: where did the week go?!


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Saturday, March 20, 2021

The Disability Blogger Weekend Link-up—spring-is-here edition


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Wednesday, March 17, 2021

The new normal and why we'll handle it just fine

I spotted crocus poking out of the ground in our front yard this weekend, and I felt even more excited than usual to see them. Over the past year, I have been thrilled by the familiar and regular parts of life:walks at sunset, marshmallow pie at Thanksgiving, Halloween costumes, apple picking in the fall, dunks in the pool in summer. All still the same, despite the pandemic. 

I've craved normal, as we all have. I can't wait for a return to full school days, hanging with friends and family, hugging friends and family, vacations...and just roaming the aisles of Trader Joe's. With the vaccine making the rounds, normal is on the horizon. At the same time, I keep wondering just what a return to normal will feel like.  

Last weekend we went out to dinner for the first time in forever and as we drove home in the dark it seemed as if we were out on an adventure instead of cruising down the same old highway we've traveled for 18 years. It was both weird and wonderful. This week, I stepped inside a library for the first time in a year, took in the plexiglass partitions and the markers set up on the floor to keep people feet six feet apart and marveled that it hadn't felt like 12 months had passed. Weird and wonderful. 

My friend Wendy and I have been talking about the baby steps we'll take to ease back into public life—a trip to the store here, a meet-up with someone there. A lot of us have some form of pandemic PTSD. Those of us who have been quarantining will need to convince ourselves that it's OK to emerge from our cocoons, safety measures in place. While I'm not thrilled about wearing a mask indefinitely or avoiding parties and large gatherings, that's what it's going to take to keep protecting ourselves and others from Covid-19. And any state that says otherwise is defying the guidance issued by the Centers for Disease Control and Prevention, and putting its citizens at risk. 

Even as all this whirls around my mind, I reassure myself that as the parent of a child with special needs, I have experience in adapting to a new normal. Life after Max was born was anxiety-provoking, as things can be when you don't know what to expect. Nothing felt secure or certain. Nothing felt like it "should." But as time passed, I adjusted. Letting go of long-held perceptions let me accept reality—and appreciate and enjoy my boy for who he was. Not what I expected, not what I'd been used to, but: a new kind of normal. His normal. Our normal. 

This time around is a whole other experience, obviously, but there will be a similar shifting of gears and acceptance of a new normal. While parents of children with disabilities have had to contend with extra struggles during the pandemic, I think we are well equipped for re-eentry. Because as we are well aware, even if life as we once knew it now feels different, it can still be great. 

Monday, March 15, 2021

Distraction is the answer to parent sanity

Since Max was a kid, he's had varying passions—spaghetti, the color purple, Lightning McQueen, car washes, firefighters. Los Angeles is his most recent one, and we're going on a few years now. He is hell bent on moving there, as he reminds us often. And by often I mean every hour on the hour. He'll tell us that, he'll text it, he'll stand in our entry and weep because it's chilly outside and it's 80 degrees and L.A., as has happened recently. 

Max is old enough and bright enough to understand reason. But choosing to accept reason, well, not so much. He wants what he wants. (Who doesn't?!) And he is very, very stubborn. And he perseverates. Over the years, we have found that extended discussions involving said fantasies are the easiest way to keep him calm. The thing is, Max is 18 years old and I don't think it's fair or right to tell him that yes, he is definitely going to move to Los Angeles, what he'd like to hear. 

I have found ways around this by saying things like, "Oh, yes, I totally get wanting to move to where it is warm all the time!" and "You never know, someday you could live in Los Angeles!" I have also found that when Max keeps repeating "Los Angeles is my home," it helps to shift the focus of the discussion. It gets really tiring to keep talking about Los Angeles. No offense, Los Angeles. 

"Ohhh, yes, Los Angeles has great steak restaurants! What do you want for dinner tonight? Maybe we can grill steak!"  

"Los Angeles is great! It's fun to travel and I miss it. You know, I want to go to Hawaii when we are traveling again. Would you like to go to Hawaii? It's warm there!" 

"Los Angeles is nice. I think I'll plant some nice flowers in a few weeks, when it's warm. Max, spring is coming up! Do you know what day it is?" 

We all deserve our fantasies. We also all deserve some peace.

Distraction has come in handy for all my children over the years, but continues to be the most helpful way of managing Max's tendencies to perseverate. We got into a whole other topic the other day when we ended up discussing middle names over dinner. He asked about Benjamin's (Spencer). And he got it into his head that Ben's middle name is better than his (Grant). 

"I want a new name!" he announced. 

"I don't think you could have the same one as Ben," I said.

"I CAN!" he announced. 

I guess technically, he could. 

"So would you like your new name to be?" I asked.

"Fireman Max Spencer," he said. 

I pointed out that we already referred to him as Fireman Max. And then, I asked if he wanted to bring some treats by to our local fire department for Easter.

Distraction for the win. 

Friday, March 12, 2021

The Disability Blogger Weekend Link-up: Better late than never!


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Monday, March 8, 2021

Tween TV shows as speech therapy, for the win

My children have used up their lifetime allocation of screen time this past year, and I've chosen not to feel guilty about this. As it turns out, it seems to have done Max some good. 

Lately, I've been noticing him using more everyday expressions like "no way!" and "I'm bored" and "that's cool" and "you got it" and "you're the best." The other week, I went into my office in New York City just for the day and when Max texted to see where I was, I sent him a video. (He visited once and loved it.)

"You are kidding me," he responded. 

I had to smile; I'd never heard him use those words before. At first, I wondered where he'd learned the phrase, as it's not something Dave or I tend to say. Then this weekend, I was in the basement, aka the Max Cave. He can often be found down there and he sleeps there, too, his own private getaway. Victorious was on, his favorite show second only to Jessie.

As I folded laundry, I listened to the dialogue. And it dawned on me: Max has been picking up vernacular from tween shows. And anything that will help him better fit into a world that views people with intellectual disability as so very different is OK by me—it's another form of speech therapy! Max doesn't have friends from whom he can absorb conversational speech (and, er, attitude).

That said, Max has a Max-ism that I adore: "very so good." As in, "Los Angeles is very so good" and "that ice-cream is very so good." And when Max is excited about something, he has a unique way of pumping his fist in the air and shouting "YES YES YES!" While I'm glad for him to use common expressions, I'm all for Max being Max. He does not sound like most other people when talks–he speaks Max. And that is very so good, too. 

Friday, March 5, 2021

The Disability Blogger Weekend Link-up is good to go


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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


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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


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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


What to do if you're new  

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

Like this: Love That Max: Getting a Covid vaccine shouldn't feel like winning the lottery, but it does

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

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

Thursday, 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  

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

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

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

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

Thursday, 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. 


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