Friday, July 31, 2020

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

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: The nicest thing someone's done for me lately

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.

Wednesday, July 29, 2020

The nicest thing someone's done for me lately and the big-time joy of small kindnesses

The basil was sitting in my fridge for a good week before I got around to using it. I'd poked holes in the plastic bag to help keep it fresh but dang, it wilted. It was fine for a salad, not so much for the tomato, basil and mozzarella plate I'd wanted to make for Sabrina and Dave. For that, you need pretty basil. 

A neighbor had posted in our neighborhood Facebook group that she had an abundance of basil, and I'd claimed some. We are not one of those families that has managed to get it together and grow our own pandemic produce. But I was eager to make that dish. I messaged Stephanie—did she have any more basil, just a few leaves? A few minutes later, she replied: "I can snip a bunch for you." She left them on her front porch. Yesterday, I surprised Sabrina and Dave with the dish at lunch and got happy grins in return. I zapped Stephanie a photo, with a thank you. 

These days, gestures like sharing garden goodies mean a lot.

Little kindnesses are a reminder that as socially isolated as we may feel, people are still thinking about each other.  

Little kindnesses remind us that human connections and care endure, despite a virus that has torn our country apart in many ways.  

Little kindnesses are refreshing treats in days that blend into each other.

Little kindnesses are an antidote to the seeming selfishness of people who refuse to wear masks. 

Little kindnesses are the lifts we need when the news and the world itself seem oppressive and sad. They are comfort food for our souls. Just thinking about them gives me the warm fuzzies.

This week, a wonderful woman Max met at his sleepaway camp sent us yet more masks she'd sewn for him and for our family. Months ago, my sister brought me a watermelon-flavored lip gloss that we loved as kids. The gold tin has been sitting on my dresser ever since. I haven't much used it; it makes me happy to simply see it there. When I'm working in the attic, Dave often brings me a sandwich and drink for lunch (I call him DaveDash), and just the sound of his feet trudging up the stairs gives me a lift. A guy in our neighborhood regularly asks me if I need anything when he goes to a grocery store or drugstore, because he knows we're still not going to stores. We're doing fine with getting stuff delivered, but every time he asks, it is so comforting.  

Being the person doing a kindness can be just as enjoyable. I was legit thrilled to present that tomato, basil and mozzarella dish to Sabrina and Dave. Recently, when someone asked if I had a couple of extra masks because they were needed for a plane flight to to visit an ailing parent, I was glad to mail her some. That person was really grateful, and I felt great sending them to her. Win-win. Mother Teresa I am not, as I've often said, but it was no big deal. 

Our days are long. The future is uncertain. The anxiety can be overwhelming. Whether we're giving or receiving, we need those little kindnesses, now more than ever.

What's the nicest little thing someone's done for you, lately? 

Monday, July 27, 2020

Virtual programs and classes for children, teens and adults with disabilities

After I found out last week that the New York City Ballet was offering free virtual classes for children, teens and adults with disabilities, I decided to ask on the Love That Max Facebook page what other virtual programming people had heard of. Here, a list of places I've heard of; most of them are free If you know of other online programs or classes for children, teens and adults with disabilities, please share!

The New York City Ballet is offering free weekly Access Workshops via Zoom.  The ones on Wednesdays at 12:00 PM ET are for children ages 4 to 12 (click here to sign up); the ones on Tuesdays at 3PM ET are for teens and adults (click here to sign up). Each are taught by an NYCB dancer, and will take place through the week of August 17. 

Only Make Believe—a nonprofit that typically creates and performs interactive theatre for kids in hospitals, care facilities and special ed programming in New York City and Washington D.C.—is offering free online interactive theater. Click here to get started

The HSC Pediatric Center's program Kids in Action has a wide variety of online activities for kids—check their Facebook page here.

Spectrum Creative Arts is offering fee-based virtual music, art, dance and theater to students with special needs. You can submit a form here to get started. 

Steph "The Hammer" Hammerman is the world's first CrossFit Level 2 trainer with cerebral palsy. She is offering an adaptive focused class on Mondays and Wednesdays at 11 a.m. EST, for free until August 1 for people with CP, then launching a paid website with programming ($20 a month, unlimited). You can email her for more info at

Friendship Circle of Michigan offers Jewish-themed virtual programming for children with special needs. 

KEEN (Kids Enjoy Exercise Now) a nonprofit that offers free fitness programs to youth with disabilities, has free virtual programming through local branches in Chicago, Greater DC, Los Angeles, New York, Phoenix, San Francisco and St. Louis. Click here to find a branch

Bridgewell Family Support Center has 30-to-45-minute daily classes for adults with disabilities that include dance, fitness, singing, stories, music, arts, crafts, yoga and show and tell. Program director Judith Doherty mentioned on the blog Facebook page that they welcome all ages and abilities in their groups. You can see the weekly calendar on this page (scroll down) and you can email her for Zoom log-in info at

Cosmic Kids Yoga: Children of all abilities are obsessed with this YouTube channel and its perky yoga instructor. 

Friday, July 24, 2020

The Disability Blogger Weekend Link-up: It's OK to be social here

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: Helpful Information About Masks—What To Buy, What's A Scam & How To Reuse 'Em

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.

Wednesday, July 22, 2020

Helpful information about masks—what to buy, what's a scam and how to safely reuse 'em

I had a long chat the other day with a man who owns a medical supply company, my idea of a good time these days. My friend Michael, who runs a nursing home, connected me with him. This guy has been selling masks long before they became trendy. We bought some KN95's from him, which are the same as N95's but they're made in China (here's a good overview on masks from the FDA).

I wanted to be sure we got KN95's from a company approved by the FDA for sale to the U.S. We mostly  wear fabric masks when we are outside. But Dave has had to travel for work, including getting on planes and going inside offices, so we needed some on hand. 

In general, be careful where you buy your masks from. We got ripped off by a site named Duvely back in March, when I was in pandemic panic mode. I bought masks billed as "medical protection masks/Coronavirus filter masks" and failed to read the full description on the site:

The above has since been taken down; I grabbed a screenshot after I realized we'd been duped. What we received were masks described on the packaging as a "fashion dust mask." Note the full description, especially the part where it says it will prevent smog, dust, sand, haze and other contaminants from "inhaling the human body." Ha ha ha. The joke was on me.

Did I mention I paid $17 a pop?! (See: "pandemic panic.") There is a special place in hell for companies that rip off people trying to protect themselves from Covid-19. I tried to return the masks, but they needed to be mailed back to Peru—and the shipping cost was $149.25. I ended up reporting Duvely to my credit card company. As we chatted, the rep told me about entire states getting scammed by people selling bad masks.

The guy I was talking with at the medical supply company also noted that there are a ton of counterfeits out there. As he said, "Buy a KN95 from a gas station and there's a good chance it's a counterfeit. Same goes for any that are super-cheap, like one or two bucks. They're just not available at that price." We paid $3.25 each for ours.

I asked him for some tips about caring for KN95's and other masks. He recommended removing them from the ear loops, not from the front part, to keep them free of dirt and natural oil on fingertips, and to keep the filter intact if there is one. He also advised tossing the KN95 after every four non-medical uses, as sweat and respiration could make the filter start to decompose. I put a little pen mark by the ear loop every time one of us wearS one, to keep track. 

A few other key pointers:

• Wash your hands before putting on the mask. Perhaps you are already obsessively washing your hands or making your kids do so? 
• If you put on a KN95, hold your hand over your nose, exhale and you feel your breath, tighten the nose clip.
• Do not microwave KN95's or spritz them with alcohol or hydrogen peroxide as it can make the filter decompose.
• Do not ask me where all your family's masks have gone. I can't find ours, either. Maybe they're with the missing socks? 

Monday, July 20, 2020

A guy with autism walks up to us and...

Last night, we drove to an ice-cream place where you call in your order and they hand it to you at the door. I stayed in the car with Ben as Max and Dave walked over. When they returned, a guy ambled over from the outdoor seating at a nearby restaurant. Max had been saying how much he loves ice-cream.

"Does he have autism?" he asked. I instinctively knew that this man did.

"No, he doesn't, but you can ask him," I said. 

"Does he have special needs?" he persisted. 

"Yes," I acknowledged. "But you can talk with him!'

He wasn't wearing a mask and Dave said, "Please, can you stand a little farther away, we'd love to talk with you but we're social distancing."

And he said, "Yes, social distancing is good."

He wanted to know what school Max goes to. When Max told him, he said it was his old school. He asked a bunch of questions: What teacher did Max have? What year was Max born? What year was Max's brother born? Why were we in the area? 

When he asked where we lived Max said, "L.A.!" I explained that Max's dream is to move to L.A. but we actually lived a couple of towns over. His name was Ben, just like Max's little bro. He was 34 years old. I asked if he was eating with his parents at the restaurant and he said yes, and that they were very nice parents.

Before Max, I probably would humored this man, even as I felt a little wary. But I was genuinely glad to chat with him—he had a lively personality and seemed so interested in making a connection. I appreciated his conversation skills. I appreciated that Max was making conversation with him. 

We talked a bit more. He said he was sorry that Max couldn't talk so well. Max said, "It's OK!" WHICH WAS THE BEST, because I have forever told people not to feel sorry for Max but there was Max, letting it be known.

We said goodbye and then Dave helped Max eat his ice-cream. 

"Ben is very nice!" Max said, and I agreed. 

The ice-cream was delish, made even sweeter by an unexpected encounter. 

Friday, July 17, 2020

The Disability Blogger Weekend Link-up: right here, right now

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: If our kids can't go back to school anytime soon, here's a radical thought: DO-OVER

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.

Wednesday, July 15, 2020

If our kids can't go back to school anytime soon, here's a radical thought: DO-OVER

Ben has a little responsibility chart that hangs on a wall in our kitchen. We've fallen off doing it these last few months or, rather, I have. But the other day, we got around to it and we put on stickers for stuff he'd done: dressed himself, ate his meals, was kind to someone. We both paused at "I enjoyed school." Ben looked at me: "There's no school because of coronavirus," he said, matter-of-factly.

Oh, that pained me. I was aware that he knew that Covid-19 exists, but the simple way he stated that made it seem as if he has accepted that reality—a disturbing reality. Especially because there is a good chance he won't be back in school this fall.  

Across the country, it's the topic on every parent's mind. I read a powerful New York Times Op-Ed yesterday, America Drank Away Its Children's Future, about how the early reopening of states has imperiled our children's education. Perhaps, like me, you've read this well-written viral Facebook post by a dad in Clifton, Virginia (note, it's been pointed out that his math is off—while he states children only die 0.0016 of the time" the correct stat is 0.0016 percent—aka 0.0000016). I've read comments by teachers who fear risking their lives with a return to the classroom, along with ones from dual-income parents who depend on school and who will struggle to support their family without in-class learning. 

I am as distraught as you all are by the thought that my children may not go back to school this fall. I am concerned about the lasting effect on their education because online learning just isn't the same. I am bummed that Max is missing out on work experienced—he'd decided to take the work track next year before the pandemic came along. I am concerned about the lack of socialization. 

Even if our children aren't articulating it, they feel it, too. This is what Max wrote on a paper he filled out on his last day of the spring school term:

We live in New Jersey, when school typically isn't back in session until after Labor Day. There's no word yet from any of my children's schools (they're in three different ones). Since there is a distinct possibility that Max's school will open but it won't be safe for him to return, I had our district coordinator add a couple of lines to the IEP that the team will reconvene to review Max's needs once our governor had decided whether or not school buildings will reopen.  

But here's what I've been pondering: Maybe, just maybe, if the worst-case-but-safest-scenario comes to pass and our children don't return to school, they could get a do-over. Maybe some children with disabilities should be held back for a year. Maybe entire classes should be held back—in a planned way. Curriculums could be rethought, so that material is not completely repeated. And yes, I am dreaming but this is wholly uncharted territory and there is a lot of reassessing, reevaluating, rethinking and reimagining that needs to be done. Why should we expect our students to be able to pick up where things left off when they were last in a class? 

Losing a year of classroom learning is a significant missed chunk of education, particularly so for students with intellectual disabilities who are also missing out on learning life skills, therapies and job training—stuff that we parents cannot possibly replicate at home. Extended School Year (ESY) was established to ensure that students with intellectual disability retain knowledge and skills over the course of the summer. Right now, we could use an Additional School Year (ASY) to make up for what's been lost. 

ASY would be especially invaluable for the students who haven't been able to participate in virtual learning or whose districts are not doing the most fantastic job with the online thing. And sure, now districts have had practice and if kids go back to school but then we revert to quarantining, they may have a better handle on it. Yet the truth is, some districts may never get it together for virtual learning. Or some teachers, to be honest.  

To be sure, holding students back a year will not help parents with the immediate challenges of homeschooling, nor will it help students with the ongoing gap in socialization or therapies. But at least, if parents knew that repeating a year was a possibility that's been planned for, we'd feel comforted to know our children will have the opportunity to make up for lost education. And so what if our children graduate kindergarten, elementary school, high school or college a year later. That will not matter much in the scheme of life. What is a year? In fact, the longer our children are in school, the better. I've heard way too much about the so-called cliff adult children with intellectual disability fall off of once they no longer have the structure of school in their lives.

Parents and teachers alike want children to get ahead in life. But right now, as school teams, districts and our local governments weigh the possibilities for the fall and the 2021 school year, they should also be pondering how students might be able to catch up. A do-over can take the pressure off the decision to return to classrooms. It would be a tremendous relief to parents and to students, too.

I am no education expert. But I do believe that choosing whether or not to send children back to classrooms is not the only choice we should be pondering right now.

Monday, July 13, 2020

I won't always be there when he falls, and that's just the way it is

Max likes to take long walks around the neighborhood, often after dinner. Along the way, many neighbors say hi to him and keep an eye on him, as I've been told. Max also wears an Apple Watch and I can track him or call him as need be, so I've grown comfortable with this arrangement, and Max thrives on the independence. 

Last night, I had to run and pick up something from a friend's porch. I buckled Ben in the car and went off to find Max to see if he wanted to come. I spotted him crossing a street and as I neared, he stepped onto a curb and fall down on a patch of grass. Max scrambled to his feet, then saw me headed toward him.

I jumped out of the car: "Max! Are you OK?"  

"Yes!" he said, and basically waved me off.

"Did you want to come for a drive?" I asked.

"No thank you!" he said, and ambled off. His knees weren't bruised and his walking was fine, so I let him go.

It was terrifying to see him fall. The street happened to be empty and if I hadn't been there, nobody would have seen it or asked if he was OK. And what if he'd fallen on concrete and really hurt himself?

My mind cycled through the scenarios. 

If he'd fallen and not been able to get up, someone would have eventually seen him—our neighborhood is a busy one—and let me know. If he was able to do so, he would have known to call me or Dave from his watch.

If it was someone passing by who didn't know Max and saw him lying there, hurt, would they have understood him when he told us our address? Maybe, maybe not. If not, they might have called the police. And what if a Bad Person driving by saw Max, incapacitated? 

If the police would have come, would they have understood him when he said his address? By that point, would someone have shown up who knew him? And what if an ambulance was necessary? 

It was like a twisted form of that book If You Give a Mouse a Cookie. My brain was in total freakout mode.   

A few minutes after Ben and I returned from our errand, Max walked in.

"Did you have a good walk?" I asked.

"Yesssss," he said.

"You're sure you didn't get hurt?" I asked. 

"No!" he said, and flashed me a grin. 

Later, we talked more and I made it clear that if if he fell again and he got hurt and he was alone, he should call me or Dave. The truth is, Max is going to fall on occasion—curbs and uneven pavement are a longtime hazard—and we have to accept that. This is going to be true of many parts of Max's life as he gets older, and we'll have to figure out ways to enable and help him. We're going to find a spot on his phone where we can program in our address, so he can show it to someone if need be—he's proficient at navigating the screen. 

Soon enough, he headed down to the basement his Max cave to watch TV. He was struggling to open the basement door. 

"Max can do it!" Ben announced. 

Sure enough, he did. 

Friday, July 10, 2020

The Disability Blogger Weekend Link-up never stops

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: Fish chowder, a blankie, the Max cave and other self-medicating stuff

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.

Tuesday, July 7, 2020

A visit to Brooklyn

I visited my mom this weekend for the first time in nearly four months. She lives in Brooklyn in an apartment building we moved to when I was 12. It's an old-school building—no doorman, just a glass door with a lock, a lobby that doesn't try too hard or try at all, and six floors of apartments with hallways painted Depressing Beige. I found a parking spot (each time, it's like a miracle) and walked the empty street to my mom's. Not surprisingly, the gaggle of senior citizens who usually sit outside the entry in folding chairs weren't there.

Mom was, as usual, wearing one of her housedresses. Vintage, some might call them, as most have been around since I was a kid. I'd brought her 2020 tributes of love: a bottle of Clorox spray, masks and disinfecting wipes. She is one of the more selfless people of the world and inevitably she said, "Ellen, keep them for yourself! You'll need them" So when she wasn't looking, I stuck them in the cabinet beneath the kitchen sink. I cleaned the kitchen and her bathroom and tossed the expired food and plastic utensils she insists on reusing. 

We sat on the sofa and talked about her grandkids, life, politics and the weirdness of the pandemic. My mom was born the year of the Great Depression, and we discussed how her parents had survived the 1918 flu pandemic. "My mother was the most wonderful person," she said. "I'm not nearly as good as she was!" Which was funny, because I think my mother is the nicest person I have ever known and I that I fall far short of her. She told me how her mom used to volunteer at The Brooklyn Home for Infants, an orphanage, which I hadn't known. 

I asked my mom to make a video for the kids. She spoke, as she always does, with so much warmth and care: "Guess what? I love each and every one of you, collectively and individually....I send you a zillion trillion kisses." I cried as she spoke but she couldn't see it behind my mask. 

Mom was hesitant to go outside—it was a hot day—but she hadn't seen sunlight in a while and I thought it would be good for her. She eventually agreed. We put on masks, rode the elevator and she gingerly walked the five steps down to the lobby, making me painfully aware of how frail she's getting. Mom stood on the building's brick stoop, where she greeted everyone who walked through the doors. It's a pretty communal place, and the management treats tenants pretty well. A few weeks ago, everyone found a couple of tickets in their mailboxes to use at an ice-cream truck management had hired; it showed up on a Sunday and people stood at a distance and got their treats. Mom didn't go. 

A guy walked in who I hadn't seen in years. I thought his name was Milton but if not, it was a good guess for an older guy living in an apartment in the middle of Brooklyn. We got around to the subject of masks, and he said he'd been wearing the K95 on his face since since March and the other day he'd walked 15 miles to a doctor's appointment—!!!—and it had started raining but he shielded the mask with a magazine. I mentioned that he needed a new one because there was only so many times that you could reuse a K95, then he peppered me with questions about masks until I politely said I was no expert.

"Ah, she's so modest, my daughter is highly intelligent!" said my mom, because: MOM. If she only knew that as we were speaking, the only thing I kept thinking was: At what point do men grow ear hair? No matter. Nobody on this earth will ever love you like your mom loves you. 

After a few minutes, we went back inside and my mom slowly climbed the five steps back up to the elevator landing, leaning on my arm. We noticed a box sitting on a windowsill that had "Gloria" scrawled on it and realized that it was a food delivery for her. 

I pressed the elevator button with a gloved hand but the car was stuck on "B." I have always been terrified of basements in apartment buildings. The one I grew up in had an ancient dark one, and I have a vaguely horrifying memory of the furnace and an open door where you could see fire roaring. 

When the elevator didn't arrive after a few minutes, I rang the superintendent's buzzer. No response. I called my sister, Judy, and asked her to give him a call. Then a woman walked by who said she'd been in the basement doing laundry and the elevator was stuck. My mom had to climb four flights of stairs. She didn't complain once, but looked pale and drawn by the time we got back to her apartment. She rested on the couch and I got her water. As I unpacked her food, she asked if I wanted to take any home. Mom!!!

I puttered around a bit more. I threw out a dusty box for a clock sitting on a table (my dad was a big proponent of keeping the boxes stuff came in) and a stash of empty plastic water bottles and admired an old chubalicious baby picture of Judy. I realized the air conditioner filter hadn't been changed since forever and ordered one. My mom urged me to get home in time for dinner. I made sure her meal was set, kissed the top of her head with my mask still on and headed out. 

Monday, July 6, 2020

Fish chowder, a blankie, the Max cave and other self-medicating stuff

Max cried when we got home from the Jersey Shore on Saturday night. It's a tradition in our family, the sign of a great vacation. Typically, Max would just mope around for the next few days and repeatedly ask when he was going back. But Max has matured and this boy knew just what would make him feel better—a truly useful life skill. 

It started before we even left our beach condo. Max insisted on bringing home the blanket he'd been using that week, a new white cotton number. Max is not usually one to have an attachment to things. This used to worry me when he was little, because everything worried me when he was little—I didn't get why he didn't have a favorite stuffed animal. And now, at 17, he finally had a blankie, a memory of the good times we'd had during our trip. We took it home on Saturday. 

On Sunday, for breakfast Max wanted the same kind he'd been having at the shore: a cherry cheese Danish. We'd been going to a local bakery that makes great apple turnovers, and it turns out Max has a thing for cherry cheese Danish. So Dave googled and found a bakery in a town near our house known for theirs, and off they went. Afterward, Max sat on his iPad checking out houses for sale at the Jersey Shore. 

Lunchtime? Only fish chowder would do~ Off went Max, Dave and Dave's dad, in search of seafood that tasted like vacation. It was a true happy meal. 

In the afternoon, Max retired to his Max cave—aka our basement—where he likes to chill out with his iPad. I didn't ask what he was watching but I'll bet anything there was some fantasy beach home browsing. He emerged a couple of hours later in time for an evening BBQ. Dessert was key lime pie, courtesy of Sabrina, who had her own desire to keep the vacation vibes going. 

Max crashed in our basement last night. (Not pictured: his blankie, which was in the wash.) I went down at 11:15 to toss laundry into the dryer and he was still up, determined to stay on his vacation scheduled despite the fact that today he went back to virtual school. 

"I'm still on vacation!" Max said.

I wasn't going to tell him otherwise. I tucked him in, turned off the light and went back to reality. 

Friday, July 3, 2020

The Disability Blogger Weekend Link-up: Make some fireworks edition

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: For anyone who thinks people with disabilities are so different, I give you: sibling rivalry

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.

A great store for shades: a guest post by Sabrina

This is a guest post by Sabrina. She recently tried out SmartBuyGlasses, which she reviewed in exchange for a pair of shades. Her opinions are firmly her own, however. As usual.

Now that summer is here, everyone wants to feel prepared for hot days. Sunglasses are the most important essential, since they keep your eyes safe and they keep you super trendy!

I went shopping on to find the perfect pair. You can easily look up your favorite brand, or if you have a hard time choosing like me, there are a variety of designs and styles you can browse. The site is really well organized, the prices are good and the shipping is free. There is even a "best price guarantee" and if you find a better price after 14 days of buying a pair, they will match the price.

What's especially awesome is that you can do a virtual try-on to see how you look in different styles of glasses. All you do is take a five-second selfie video on your computer (a video tells you how to turn your face for the right angle). Then it tells you your face shape—it said my face shape is oval, with a chin slightly narrower than my forehead, so all frame shapes and styles would work for me. 

After you take the selfie, you click "go to try-on." Whenever you want to see how you look in a pair, you just click "selfie view" and the sunglasses pop right onto your face. It's fun and helpful, especially since a lot of stores aren't open right now. It's also a little addictive!

I especially love Ray-Bans, and my mom refused to buy me a new pair after I lost my last one so here was my chance! I got the hexagonal metal flats style. Now I just need to keep them out of my little brother's hands.

The people at the store are offering readers a 10 percent discount—just enter the code LOVETHATMAX10 at checkout. Wishing you a happy and healthy summer!!!

Thursday, July 2, 2020

For anyone who thinks people with disabilities are so different, I give you: sibling rivalry

We're on vacation this week at the shore, which has helped us all chill out and also provided many new opps for the rivalry that exists between Ben and Max.

Who will zoom out of the condo and get to the elevator first?

Who will get to the car in the garage first?

Who will finish their donut first?

Who will get to sit in the front of the golf car we rented?

Who has the bigger share of pasta?

Who will have their pajamas on first?

And so on and so on and so on. OMG.

These two can go at it pretty intensely. At first, it was surprising to me because of the 13-year age difference. But I guess it makes sense. Ben resents the extra attention Max gets since he has cerebral palsy and occasionally needs a hand. Max resents the extra attention Ben gets since he's a little guy who occasionally needs a hand. Sabrina is Switzerland—she doesn't get into arguments with either one of them.

Max and Ben are each pretty good at standing their ground and roaring at each other, perhaps skills that will come in handy someday (or so I like to tell myself). Max may have disabilities, but he is as competitive as any sibling. It's as nerve-wracking to me and Dave as it is to any parents, and we  regularly play peacemaker.

Things came to a head on the basketball court the other evening. Ben and Max were supposed to take turns over who had the ball, which wasn't working out so well and there was a lot of shouting. Then Ben scored a basket and we were all impressed...except Max.

Max had the ball next and even when he missed the hoop, it was pretty amazing to see him lifting his arms over his head and throwing that ball around.

As he kept taking shots, Ben shouted "Max, you're really bad!" I told Ben that was not OK to say and that Max was trying his best.


"I'm very GOOD!" Max announced, took a shot, and swish. Revenge basket!

Sibling rivalry wins.

Wednesday, July 1, 2020

How parents of kids with disabilities can learn to get out of their own way

This guest post is by Jane Kim. A writer and mom of an eight-year-old with autism, she works in the field of immigration and lives with her family in the Philadelphia suburbs. 

When I was younger, there were things I believed would happen when I became an adult. My house would be organized (nope). Dinner would never look like this (it does).

My salary would be 25% more than what it is. My child would play Chopin, be witty and kind, and be a formidable tennis opponent by thirteen (nope, yes and yes, not yet.)

No one tells you you’ll be OK even if things don’t happen as you envision them. And that you’ll likely be even better than OK. 

Our kids are our lives, so it’s often hard not to let go of our expectations of what they should do, how they should act, who they should become. While all parents grapple with this, it can be more difficult for parents of children with disabilities, because challenges and limitations often present themselves earlier than in typically developing children. When I first received my son’s ASD diagnosis, it was a scary and lonely time and the future was bleak. With time and support, I was able to reframe my mindset and focus more quickly on what was working, rather than what wasn’t working. I’ve developed the capacity to adapt more quickly over the years, and this has had the biggest impact on my ability to get out of my own way. 

Don’t get me wrong: It can be easy to wallow in self-defeating behavior. The hard part is identifying those triggers that set you off. When it comes to my relationship with my son, the following adages have helped me be a better mom and human.

There isn’t only one “right” way.  
My son’s class was celebrating Valentine’s Day, and his teacher informed the parents that the kids could bring in Valentine’s cards for their classmates, to have a party and card exchange. Remember those brightly decorated paper bags with your name on it? And how excited you were as a kid to receive and exchange cards? 

I certainly do! I loved reading the heartfelt messages and seeing whether candy, stickers or a toy were attached to the cards. But when I saw the email from his teacher, I became anxious.  My son struggles with writing – specifically, the motor planning piece of it – and I envisioned us sitting down for what  should be a fun relaxing activity ending with one – or both of us – in tears. Instead of him writing all 20+ names on the cards, we decided he would write his own name, type the names of his classmates, and then cut and paste thm onto the card. Voila.  A great time had by both, with some adjustments. 

Success doesn’t mean one thing. Stay focused on the big picture. 

It’s easy to worry about the things your child can’t do. We tend to focus on the “nots,” rather than on all the amazing stuff they can do. When my son was younger and playdates were nonexistent, I couldn’t imagine the day he would have a buddy, much less more than one.  But that day has already come. I couldn’t imagine him telling a joke or being sarcastic, some of the subtleties that come with more nuanced communication. But just the other day, I heard him giggling in the kitchen after asking Alexa to make fart sounds. However, I still worry every…single…day. I worry about him because he struggles with zipping his coat, and for some time, this goal has been on his IEP. Then I think about how he introduced a school play, how he can walk home from the bus stop, how he orders food at restaurants (and at the Starbucks drive-thru) and I think about what’s more important, in the big picture. I’ve learned that training yourself to recognize when you are going down the rabbit hole is key to both you and your child’s well-being.
When nothing goes as expected, remember to be kind to yourself.

Maybe you took your child to mini golf and she refused to play more than one hole.

Or perhaps he spent most of the dinner at your friend’s house going from room to room turning the ceiling fans on and off. Maybe you went to the movies and the only way she would sit through it was if there was an endless supply of pretzel bites and you massaged her arm while she ate it. When nothing goes as planned, we tend to blame ourselves. It took me many years to develop the ability to pause, remind myself my intentions were good (which is what ultimately matters) and give myself a break. Calling a friend, a brisk walk, listening to a podcast, relaxing with a face mask – all do wonders for rejuvenation. 

Trust actions, not words. 

When I was growing up, my mom stressed the importance of this often, and it left an impact. When your child has a disability, these four words can save you time, money, disappointment and frustration. You’ve likely experienced one or two of these scenarios: Your boss or employer says they understand your need for more flexibility, but your schedule remains the same. The board certified behavior analyst, the person in charge of supervising the people providing ABA to your child, keeps insisting she will add new goals and social activities to his or her programming, but never does. Rather than resenting them for the things you wish they would do, adopt a more proactive role and take steps toward the change you would like to happen. For example, propose a workable schedule to your boss and ask her if she would consider a trial period. Have a candid conversation with your ABA team. Share with them some of the challenges your child faces, and how new goals and activities can address these challenges. Your input as a parent is the most valuable, and your ABA team should recognize that.

Resist the urge to be defensive and accept constructive feedback.  

I know the areas in which my son struggles, and I know those in which he shines – but it’s still hard to hear about your child’s challenges from others. This year, we’re trying to figure out whether his public school is the best fit for him. There have been ups and downs. A few weeks into the school year, we discovered he wasn’t being given the opportunity to walk to the classroom independently after getting off the bus. There have also been pleasant surprises, like the time I was the guest reader, and was running late. When I walked into the classroom, he was excitedly reading to the class, unfazed by the empty chair next to him. 

Over the years, I’ve tried to take in information about my son with an unbiased ear. It’s hard and it takes practice. When I get constructive feedback that I may not agree with, or find myself getting defensive, I try to wait at least 24 hours to digest the information before responding. I’ve found that a new day can bring a new perspective – in addition to sparing you from regret! If it still doesn’t sit well, I’m lucky to have a couple trusted people in my life offer their perspectives, which broadens my own. Having them as a sounding board has been incredibly helpful.

Jane Kim can be found on Twitter @JKimRites.

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