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Virtual reality: Making the most of remote learning

School starts tomorrow, and Max will once again be seated at our dining room table and staring at his iPad. He is doing virtual schooling for the indefinite future. Every family has to make the choice that feels right to them, and that's what felt right to us even if we are still grappling with the realities of what it will mean. 

For Max, school has always been his social life, and he is one very social person. I mourn the loss of in-person interaction with his peers. Max is also disappointed not to return to school, but at the same time understands. He'll get to do more mingling with friends in after-school clubs (they'll all be virtual).  I know he'll get into the spirit of Zoom-ing, and he'll get to do more mingling in after-school clubs (they'll all be virtual). Sabrina will also be learning at home. Ben is going to an outdoors-only preschool for a couple of months. 

This year, Max will be in a program called Work Experience Cluster (WEC). In ordinary times, it would have enabled him to sample work opportunities in the community. Instead, he will be doing Zooms to learn related lessons and life skills.  

Yesterday, I spoke with Max's new teacher. Last spring, all students in the school were on Zoom, creating a communal experience that truly worked for Max. This year, four students in his class will be doing virtual learning and six will physically be in school, a hybrid experience that will have to work itself out. (The school day will go from 8:45 am. to 12:45 p.m., no lunch break). Students on Zoom will not be able to see the students sitting in the class for privacy reasons, the school has decided, although they will see the other students on Zoom.

As with everything involved with raising a child with disabilities, you have to make your child's needs known. I'd mentioned to the principal at some point that it was important for Max to have a really dynamic teacher, as he did last year—it was so important for Zoom-ing. I mentioned to the teacher that Max really likes to engage with other people and it's equally important for him to be engaged, and she reassured me that she would speak to him and make sure his voice was heard. She noted that he could also type comments, and I'm sure he's going to take her up on that. I so feel for her and other teachers, who already had a lot to juggle even before the pandemic began. 

I asked if there had been any discussion about continuing work experiences virtually, and she yet hadn't heard about that end of things. Obviously, some businesses right now are just struggling to stay afloat. But there could be some that would be willing to do virtual presentations.  There might be employees working from home who could do tutorials—say, show students how they use a shredder. Perhaps an employee at a supermarket could do some sort of presentation and virtual shopping in which students would add up purchases.

Of course, right now the focus is on getting the school year off to a safe (and sane!) start. But with some creative vision and planning, virtual employment opportunities could definitely happen. I hung up the phone and emailed the principal and vice principal some thoughts. I noted that the school had done an admirable job transitioning to virtual programming last spring, and I had faith that virtual WEC experiences could happen through a meeting of the minds. Happily, he responded that the school has been thinking of ways to incorporate similar ideas into the school day, and once things had settled down they planned to put plans into place. That was reassuring to hear, and I mentioned that other parents would find it reassuring to know as well. The more information we have, the better.  

A year ago, if you had told me that my children would be doing virtual schooling, my head would have exploded. It often still explodes, although for different reasons, but now I know that virtual schooling can work. Not for every single child, and not all of the time. Yet it's been a good thing for Max. And it could be a good thing for his future in the work world, too. 

What we learned as first-time RV-ers: an FAQ

It's been a week since we got back from our RV trip, and I'm missing our little home on wheels. Friends have been asking questions about our experiences, so I figured I'd share some more info. 

How do you plan an RV trip?

We started with Go RVing, a great resource to explore when you're thinking of renting an RV, buying an RV (we were fantasizing about this by the end of our trip), or figuring out ways to enjoy the RV camping lifestyle. 

Do you need a special driver's license to drive an RV?

Nope. 

Is an RV hard to drive?

Dave did a couple of practice runs before we took off for our trip. He was a little nervous at first, especially about making the wide turns, but felt more comfortable as our trip progressed and even had no issues backing the RV into spots at the places we stayed. We visited three different campgrounds a few hours apart from each other—we wanted an easy inaugural RV trip. In general, it's not recommended to drive an RV for more than six hours at a stretch. Really, the thing we worried most about was whether we'd lock the keys to the RV in the RV (we didn't).  

Is it tricky to maneuver RVs in certain places, like tolls?

We never ran into trouble, especially since we used the Copilot GPS app that offers RV-specific routes. 

How much does it cost to rent an RV? 

Anywhere from around $120 a night and up (way up—there are some really fancy RVs out there with islands, fireplaces and outdoor kitchens). Insurance is extra (your auto insurance will not cover this), plus you have to pay a fee per mile traveled if you go through a company (or a fee after you're first 100 miles). You also pay extra for liveability kits that include essentials like pots and pans.  

Does it feel cramped inside an RV?

Not at all, especially when we flipped the switch to open the RV's three slideouts, which got us several extra feet of space. In general, it felt cozy in there. Our RV, a Newmar Bay Star, had a full queen bed in the back, two bunk beds opposite the bathroom, and a pull-out full sofa. There was a good amount of cabinet storage, too.

Do you have to be an experienced camper?

Heck no. If it's any indication, one night we had to read the instructions on the Jiffy pop to make sure we were heating it right over the fire. We visited campsites that had full hookups for water, electricity, sewer and cable. They all had grills, firepits and RV-side garbage pickup, not exactly roughing it. 

How did you figure out how to do the hookups?

You get a walk-through when you rent your RV (it's a good idea to take videos). Still, we were nervous newbies and the first two times we hooked up stuff at campsites we asked someone from maintenance to take a look and make sure we'd done it right. Dumping the waste connection is as simple as pulling a lever out. Gross, but simple enough.

How much room is there in the fridge and freezer?

Enough! We did a couple of Walmart pickups along the way to replenish supplies. All the campgrounds we stayed at had stores where you could get anything from food to firewood.

What do you eat?

We brought burgers, hot dogs, and chicken wings for grilling; fixings for taco night; turkey and PB&J and bread for sandwiches; frozen mac 'n cheese; and pasta plus a couple jars of sauce. None of this, however, could stop my children from insisting that we order in sushi one night. Oh, and FYI, there's no such thing as too many s'mores—we had them every night, once with peanut butter cups instead of chocolate. Highly recommend.

What do you do all day?

Our children enjoyed playgrounds, pools, mini golf, basketball courts, tennis, giant jumping pillows and even a mini water park and lazy river (those two were at Yogi Bear's Jellystone Park in Gardiner, NY). We rented golf carts (around $45 a day) and that was a lot of fun, too. We also just enjoyed taking walks around, checking out the different RVs and setups. I especially loved the vintage RV's.

We felt like we'd discovered a whole new world. One day, we noticed the guy in the RV behind us mowing his lawn. Wha?! Turns out that people rent campsites for the entire summer, park their RVs there and shuttle back and forth in their cars. There were people who set up fences at their sites and had landscaping, too. 

What about laundry?

The campgrounds we were at had laundry rooms. But I brought along a giant laundry bag and just dealt with it when I got home. 

Would you do it again?

Sign me up! One of my bucket-list trips is touring all the national parks in an RV. 

The Disability Blogger Weekend Link-up is not hosting a convention, just a link-up

What to do if you're new  

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Max shows us how to swim

When Max was a tot and people asked if he was doing stuff other babies did—saying sounds, pulling to stand—I'd say "no" as calmly as I could, even as I was crumbling inside. As Max got older and I gained hope, I started saying "No, not yet." Because although the stroke had done a number on his brain, my little love had eyes full of brightness and plenty of potential and his whole life ahead of him. Sure, I wanted him to be able to do stuff sooner rather than later. But as I came to realize, Max was operating on his own timeline and nobody else's.

When my development as a parent progressed, I learned something else: acceptance. Max wasn't going to do everything his peers did, and that was OK. Or, he would do things his own way and that was amazing, too. He would talk in his own way, hold a spoon and a pen in his own way, dance in his own way, do it all in his own way.

Of course, every person on this planet does stuff in their unique way but understanding that your child with disabilities will do that is part of the journey of being the parent of a child with disabilities. Until you understand and accept that your child may not look, sound or behave in the so-called typical way, you will never fully stop grieving the child you thought you were going to have and appreciate the child you got. Only then will you start considering your child's movements, sounds and thinking part of their uniqueness, not defaults for perfection. I honestly can't imagine a Max who walks or talks any other way. And as of last week, I can't imagine a Max who swims any other way.

 

We were at our last stop on our RV trip, Hershey Road Campground. Max isn't usually a pool person but it was a beautiful new pool, it was hot outside and there wasn't much else to do. So, pool it was. I arrived late because we'd forgotten our towels and there was Max, swimming in the shallow end of the pool. He'd float for a few seconds on his back, then he'd turn over and walk while waving his arms then do it all over again.

It was mind-blowing to see Max swimming. This was definitely one of those things I'd figured he wouldn't be able to do—there is so much coordination involved, and his arms don't move that freely, especially his right one. But there he was, having the time of his life. Not only that, but my boy Max decided he was going to make another splash with some rather graceful back-flops.  

If you're the mom of a little person with cerebral palsy, you may wonder when the developments will end. I am here to say that there is no expiration date for milestones. Max is going to be 18 in a few months. And last week, he wowed us with his swimming. And you bet he did it his way. 

The Disability Blogger Weekend Link-up is here for you

What to do if you're new  

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These are the days

We're on the last leg of our RV tour, staying at Hershey Road Campground. It's recently rebuilt (down to the new grass!) and the pool is beautiful—Ben and Sabrina were splashing around in it within an hour of our arrival yesterday. Max preferred to hang back and watch Dave get the RV set up. 

Our campsite is by a pond, and there's a playground and mini golf within walking distance. The requisite firepit is here, too—we've built a fire every single night on vacation. We are going to have major s'mores withdrawal when we get home, not to mention pool withdrawal. The one here has a splash pad, too, and cute red umbrellas that give it a resort vibe.

Our days camping have been in a time zone all their own: We don't much pay attention to the hour of the day, we don't have to be anywhere in particular, we don't have plans. I've put aside my worries about schooling and the pandemic, and just enjoyed hanging outside, the coziness of our RV or staring out the window as we cruise down the road. 

The usual family dynamics have been at play. Max wants to talk about moving to Los Angeles and Ben gets tired of hearing it. Ben wants to use Sabrina's phone and she won't let him. Or he does get to borrow it and ends up watching TikTok until I realize and I'm all: "Please get off of TikTok!" Sabrina makes it a sport of getting on my nerves, as she freely admits herself because: teen. Everyone's loudness gets on my nerves until I end up screeching "WOULD YOU GUYS QUIT BEING SO LOUD" thereby out-louding them all. Dave is always the peacekeeper.

And yet, the combination of extreme togetherness and extreme mellowness and time to ponder life has made me very aware that time is flying by and these are precious days. Ben is going to be 5 in October. Sabrina is closing in on 16. Max is going to be 18 in a few months. EIGHTEEN!!! RV-ing has a way of making you realize that we have to each other while we can. Amid all the madness and sadness in the world, these people are the ones cocooning me and I them...and shouting at me to get out of the shower so they can use the potty.

RV-ing also comes in handy if you are a sleep stalker, as I am. One of my greatest pleasures in life is watching my children sleep, peacefully and angelically. Ben's been sleeping in the top bunk, which puts him at my eye level and makes it especially easy to savor him as he sleeps.

These are the days. 

Keeping the family entertained when you're RV-ing

I wasn't sure how we'd pass the time at the campgrounds we were staying at during our nine-day RV trip, especially Max. His entire life, I've tried my best to make sure he's entertained and occupied. Except this trip, Max is showing us that he knows how to take care of himself. 

Our second campground stop: Watkins Glen/Corning KOA in Corning, New York. It bills itself as "resort luxury" so we weren't exactly going to be roughing it. Like the other two on our trip, this is a full-hookup site meaning you connect your RV to water, sewer, electric and cable and there's WiFi, too. All the comforts of home! Although, actually, we don't have a gazebo or a stamped-concrete patio.

Max is interested in the mechanics of the RV—he likes watching Dave doing the hookups, and he's fascinated by how the four levelers come down at the flip of a switch to ground the RV and then each of the two slideouts glide out to expand the RV another four feet. 

The site is surrounded by woods and the weather's been crisp and not-humid, my favorite kind—chilly  mornings are the best. There's a cool pirate ship playground, a pool, horseshoe pits and a humongous jumping pillow and pad. Later today, we're going on a mini hike. 

Uber golf cart: "DADDY, I'M WAITING!!!!"

The hours pass in a relaxed blur, marked only by mealtime. We've played mini golf and football on a big open field by our campsite, gone on walks and done countless golf cart expeditions, Max's favorite activity of all. 

When Max gets fixated on something he talks about it repeatedly, and our topic of conversation has been his dream of going to a camp in California next summer. He's been looking up photos and videos. 
Max has also done a lot of the cooking this week—eggs in the mornings, burgers and steaks over the grill for dinner. He has insisted on keeping all of his weekly therapy appointments even though we cancelled them, and yesterday he had music therapy. "I like his work ethic!" said his therapist. Last week they made up a song about going on a road trip, and Max sang along gleefully as Amanda played guitar. 

There's been some amount of whines, groans and moans from the kids, which was inevitable. Ice-cream helps (I wasn't going to leave home without it). So does pulling tricks out of my bag. Yesterday, they got water guns. The roll-up keyboard I brought has come in handy, too. And one day we made fruit slushies with frozen fruit, bananas and a hand-mixer I BYO'd. 

And then, there are the times when the kids end up enjoying the screen-time great indoors. File under: "Whatever works, works!"—the motto of this pandemic. 

Escape by RV

We headed out this weekend on our big adventure of the year, an RV trip. It was our first time renting one and we were a little nervous but also amazingly excited. We have not gone much of anywhere this summer (or basically since March), and we were all thrilled to be out of the house and in our own traveling home.

Max had been trying to get us to drive to Los Angeles, where he still wishes he could live. Visiting Yellowstone National Park has long been on my bucket list. We both finally acknowledged that for our debut RV journey, staying a bit closer to home was a good idea. Planning a trip is pretty easy, and sure beats dealing with airline travel. When I browsed Go RVing for links to local RV rentals and campsites, I found good availability. (You can read reviews about campsites at sites like The Dyrt and the Campendium app.) The hour and a half drive to our first stop, Yogi Bear's Jellystone Park: Lazy River, was uneventful although Dave discovered that my habit of being a backseat drier is even more annoying when you're driving an RV. 

The campground is large and we got a golf cart, which is one of Max's all-time favorite activities and also helps him not get tired from walking around. We brought the kids' scooters and outdoor games. So far we've enjoyed arts and crafts activities, sightings of Yogi Bear, the giant jumping pillow, various playgrounds, mini golf, a water park (we had to make reservations and there were caps on the number of people during each session), a lazy river and seriously amazing ice-cream. One sign of a great vacation: when Max asks if he can come back next year. Within a few hours of being there, he was asking if we could return next year. 

Since Max, Sabrina and Ben didn't get to go to their usual summer camps this year, we were especially glad for them to get their fix of the great outdoors. Camp is also where Max flexes his independence, and I was bummed he lost out on that. But there was no stopping him here. 

It started when he decided that he was going to do his speech therapy session in the golf cart. We'd told his longtime therapist that he'd skip it—except Max insisted on it. So golf cart speech therapy it was. And despite Max's cajoling, we are not getting him one for home so he can do therapy while sitting on our street. 

Max also insisted on cooking. At home, he makes scrambled eggs for himself and for Ben every morning. Here, too, he decided it was his job. He cooked them up like a pro and as we dug in, he dug for the usual compliments "Is it good?!" Yes, it was. Everything always tastes better when it's cooked outside.  

Once Max discovered the pedal cart track, it was hard to keep him around the RV after that. He'd wave goodbye, take the five-minute walk there by himself and then pedal away like a madman. He was literally unstoppable. I'm sure it's freeing to him to drive around, and he's really good at it. 

We have all been relaxing. I've actually been able to sit around during the daytime—daytime!—and read outside the RV. We've enjoyed cruising around the campground on the golf cart and checking out other RVs. Some people rent campsites for the entire summer and had fences set up, landscaping and pools. The guy in the RV behind us was mowing the lawn one afternoon. 

Not surprisingly, Max would be pretty wiped out by evening and was fine with letting us make toasted marshmallows for him. His record is downing 15 marshmallows in one sitting and he hasn't broken that yet, though he has the rest of the RV trip ahead of him.

Family photo: Simone Kelly

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

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).

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The story of a Lilly Pulitzer mask that used to be my dress

Years ago, before I had kids, I got a Lilly Pulitzer dress. My style is more city casual than Palm Beach chic, but I was in a boutique with a friend who loved fancy clothes (hi, Lisa!) and I paid big bucks for a floral print in juicy shades. Wearing it always made me feel fancy, like a lady who lunches, especially when I was on a summer weekend getaway with Dave. More recently, it's sat in my closet and mocked me for not fitting or having the carefree sort of lifestyle a dress like that promises. 

I occasionally give away or sell clothes on a local Facebook swap group. During one pandemic purge, I decided to offer up my dress to some lucky taker for a mere $20. For a couple of months, nobody responded, which seemed nuts—I mean, it was a classic Lilly Pulitzer dress! It was lined! I marked it down to $15. Crickets.

A few weeks ago, a woman in my town messaged me. Could she have the dress for $10? I agreed, if a little glumly. It wasn't the money; it was a part of my old life I was giving away for all of ten bucks. I wondered if I should have held onto the dress instead of going Marie Kondo on it. 

I left the Lilly in a bag by our home's walkway, half-hoping the woman wouldn't pick it up. A little while later, I looked out the front door and the bag was gone. I messaged her to say I hoped she'd enjoy the dress. She wrote back: "Thanks! I'm using the fabric for masks!"

WHAT?!?!

That would be the end of my Lilly Pulitzer dress, cut up into pieces?

It took me a minute for my mind to come around: What better ending for my Lilly dress. Actually put to use—important use!—instead of hanging in my closet and doing me no good.

I had to have one.

"I have fond memories of that dress and would like to buy a mask from you once you make them, please," I wrote.  

And the woman responded: "I would be happy to send you one!" 

I pretty much forgot about it until Monday, when she messaged to say that she'd finished the mask and would drop if off on my porch. Double the niceness! I was at work and later came down to find a bag. I opened it, saw the familiar pattern and felt so glad.

I washed it that night, let it air dry and slipped it on, wondrous that a mask could give me all the feels and grateful for a good deed at a time when life seems kind of cruel. 

Adventures in pandemic ear piercing

I haven't been inside a store since March—I've been ordering everything online, other than one trip a few months ago to an outdoor plant place. It had gotten to a point where I was feeling pretty neurotic about it. And then: Sabrina decided she wanted more ear piercings. She's been missing out on some teen rites of passage, and Dave and I felt she deserved it. I was going to have the honor of escorting her. 

I asked on my local mom Facebook page for recommendations for where to go, and got suggestions for a mall pagoda (nope), tattoo parlor (maybe?), and a mom-and-pop pharmacy a few towns over. I figured a pharmacy would be pretty good about pandemic safety practices. Little did I know. 

I called over, grilled the guy about quiet-ish times and booked a 9:30 a.m. appointment. We arrived a bit early, wearing our KN95's and gloves. We'd put our phones away, to avoid contaminating then. I had a credit card in my pocket so I wouldn't have to touch my wallet. There were a couple of other customers there. A guy in a mask handed us a form to fill out and a pen. A PEN! What a weird world we live in when a pen strikes fear into your heart. I used my own. 

We were seated in a nook, and there was a woman blowing up balloons right there. "We're trying to follow social-distancing rules, would you mind coming back when we're done?" I asked, thereby instantly mortifying Sabrina. 

The plan was to add two more holes to Sabrain's left ear, and one more to the right. I'm not sure why but they decided to do both sides at once, and another staffer approached. He was wearing a neck gaiter, only up to his nose. Yikes. 

"Would you please cover your nose?" I asked, and he did. In my head, I was thinking "OMG, you work in a pharmacy and you don't wear a mask right?!" Let alone the fact that gaiters don't offer good protection against the coronavirus, as a recent study found—and in fact can be worse than wearing nothing at all. 

After all the mask mortification Sabrina had endured, I figured that any discomfort from the ear piercings was not going to be a big deal. She was fine. Me, I was kind of a nervous wreck. I paid and made a beeline out of there. 

Back at home, Max admired Sabrina's ears. 

"I want to get my ears pierced!" he announced. 

UM.

The Disability Blogger Weekend Link-up: Share a post, read a bunch

What to do if you're new  

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Anti-worry strategies from special needs moms

A life-changing event that we could have never imagined would happen. Doctors without answers. Feeling powerless as a parent. Freakouts about the future. 

Yes, I'm talking about the pandemic. But this is also a description of how I felt 17 years ago, when Max was born and we found out he'd had a stroke. There are a lot of parallels between that time and what I'm grappling with now, especially the voluminous amount of uncertainty and worry I feel. 

Every mom worries about their child, of course, but moms of kids with disabilities have a whole other world of worry. This might be because doctors gave us grim news; we were told at the hospital that Max might never walk or talk and he could have hearing and vision problems, along with cognitive issues. One doctor said that his future looked "ominous." We also worry because we have preconceived ideas and expectations of how children "should" develop , and it takes a long time to let those go. 

Over the years, I've learned some anxiety-reducing techniques, the same ones that other special needs moms use as well. They were self-taught out of necessity, because it is not possible to go to work, be a calm parent or just live your life when all you can think about is whether your child is going to be OK. Some stuff that's helped: 

DON'T LET THE NEWS RULE YOUR WORLD

When Max was little, I tortured myself by reading the baby milestone newsletters and the What To Expect first year and toddler years books. Reading them was a painful reminder of all the milestones Max wasn't hitting. Finally, I unsubscribed and gave the books away. I still worried about his development, but not obsessing about the milestones better enabled me to focus on the inchstones—a sound uttered, eye contact made, fingers loosened and not fisted for a few minutes. Watching CNN at night at the start of the pandemic for hours at a time was having the same devastating effect on me. And so, I quit it. I check websites for news, but no more sitting in front of the TV and sobbing.

WINE. 

TAKE ACTION, HOWEVER YOU CAN

When a neurologist in the NICU showed me and Dave x-rays of Max's brain, we despaired. The doctor talked to us and Dave about brain plasticity, but I felt powerless. What could we do? During those two weeks of Max's hospital stay, though, I found out about Early Intervention from a social worker and contacted local EI coordinator. That was the one and only thing that brought me comfort during that time. Once we were back home, we got home enrolled and I started looking into extra therapies and alternate therapies and All Of The Therapies. It's how I've operated ever since: Research. Google (within reason). Network. Reach out to doctors and other parents, even specialists in other parts of the country—they are sometimes willing to share advice or recommendations. Doing what's within my powers to help Max takes the edge of the worry and, of course, benefits Max. 

As much as I'd like to come up with a coronavirus vaccine, that is not within my repertoire of skills. (Neither is cooking, if you ask my family, but please don't.) So in the last couple of weeks, as I've grown more anxious about the start of school, I've scheduled conversations. I had one yesterday with Max's principal about virtual learning and the best classroom placement for Max. Last night, I put out feelers to teachers I know about a preschool pod teacher for Ben and a few other kids, to be taught where and by whom, TBD. The future remains uncertain, but I felt so much better after getting conversations going. 

CREATE A DEDICATED WORRY TIME

Seriously. For years now, my worry time has ben 9:00 to 9:10 p.m., or as close to then as possible. I sit in the same spot, the comfy chair in our den, and give myself permission to worry about everything big and little. And when I get up, I shut the worries off. Once you get into the practice, it actually helps you quit worrying all day long because you know you have a dedicated time when you can let your freakouts fly.
 

PINOT GRIGIO, ANYONE? 

TALK TO EVERYONE

Raising Max has shown me the power of the parent hivemind—there is endless practical stuff we moms and dads know that experts may not, from the most comfy for foot braces to how to get a child to stop kick-kick-kicking the dinner table. I've picked up so much helpful info from my blog Facebook page and other groups for parents of kids with disabilities and parents of kids with cerebral palsy. As we make decisions about school, I've connected with lots of other parents and reached out to doctors and various educators in my network for thoughts and opinions. Knowledge. Is. Power.

 

GO BEYOND DEEP BREATHS

Deep breaths—from the diaphragm!—are what experts always recommend for de-stressing. So what if you have to lock yourself in your bathroom. And to be sure, you'll feel relaxed for a couple of minutes. Soon after you've taken those deep breaths, though, your brain will be headed right back to Worrysville. So this is what you've gotta take: Get your partner to TAKE YOUR CHILD/CHILDREN OUT OF THE HOUSE. Even for just an hour or two. That way, you can have time to think. That way, you can hear yourself think. Maybe you can even call a friend or, whoa, polish your nails. It might take all of your willpower to not spend the entire time cleaning and organizing, but having the house to yourself brings some peace and fresh perspective. Especially these days, when we're all on top of each other.

EVEN MORE PINOT GRIGIO. 

TRY SO HARD TO QUIT PEERING INTO THE FUTURE

When Max was an infant, I had so many questions about what he would be able to do—would he ever take steps? Would he be able to understand me? Would he be able to play with toys like other kids? Would he ever say "Mommy" or "Daddy" or any words? It took me a long time to accept that my boy Max was on his own timeline, and nobody else's. I just had to take things day by day and focus on the child in front of my eyes, not the one I wondered if he'd be. 

The same has been true for the pandemic. Deciding whether or not to let Max stay home from school has been hard, especially because it seemed like we were basically deciding the entire 2020/2021 school year. I had to force myself to focus on making a decision just for the start of the academic year, and then it didn't feel so monumental or depressing. Max likely will do virtual schooling for a while. But thinking only about the immediate future gave me focus. And once we had a decision, it was such a relief.  

ENJOY YOUR PINOT GRIGIO!

Photo: Twitter/@joncmu

Back-to-school plans, back-to-school panic

Like most parents, I'm usually excited to send my kids back to school. This year, that prospect is causing a whole lot of stress. Max's official school reopening plan came out on Friday. It calls for students to be in school from 8:45 to 12:45, no lunch break. Students will mainly stay in their classrooms except for therapy and sensory breaks. There will be a Covid-19 risk assessment questionnaire to be filled out on an app daily, and students will have their temperatures checked before entering the building in temporary tents. The staff must wear masks, and it is "recommended" that students were face coverings or masks; disposable face shields will be provided. 

The virtual option, if you choose it, will involve a Zoom livestream of the teacher talking—but not of fellow students in the class, to protect privacy. We have to let the school know by mid-August if we're choosing the remote option. 

The plan noted that the school had come to this decision because virtual instruction lacked immediate feedback between teachers and students, structure and routine, along with direct access to therapists, social workers and behaviorists, too. This is all, of course, true—virtual schooling has its drawbacks, and may not work in part or in totality for some students with disabilities. But what's also true is that this virus doesn't care about that.  

At least this video, featuring Alabama high school principal, gave me a laugh.

I've been troubled by reports of the coronavirus spreading around camps, including one in Georgia in which nearly half the campers and staff came down with the coronavirus. Masks were not required there. One thing weighing on my mind is whether students at Max's school will wear masks and wear them properly. Even if students maintain a six-foot distance, it's possible the virus could infiltrate the air. And yes, I have pandemic paranoia. So much is still unknown about Covid-19.

Max doesn't have sensory issues with the masks and has been pretty diligent about wearing them; there have been times when he's reminded us to make sure we bring ones when we take walks. It's the other students I worry about. That and the fact that asymptomatic people can spread the virus around, new research shows, as rare as that may be. 

Hygiene can be tricky when you're talking about a school of students with physical and/or intellectual disabilities. Max is not able to efficiently wash his hands alone; he would require help. I'm wary of him going to a public bathroom. And what if a fellow student decides to give him a high-five? 

Max was scheduled to go into the Work Experience Cluster, where he would have started doing some work sampling in school—such as collating brochures for a hospital. But that won't be happening, given that students are staying in their classroom, and it's still unknown what sort of work-oriented activities might be done in class. 

We haven't yet figured out plans for Sabrina (no word from her school, although the goal was to return to school) or Ben (who'll be in preschool but I haven't yet enrolled him). If Max does virtual learning, sending them to schools could pose risks to him, too. Max's mild cerebral palsy likely does not put him at higher risk for complications, I've learned, but a high fever can and has triggered seizures.

Then there's the whole bus situation—no word yet on that. Not that we'd feel at all comfortable letting Max go on a bus; we'd have to drive him both ways.

Max did really well with Zoom classes in the spring, and that was awesome. It's unfortunate that he will not be able to interact with his classmates, per the school's new policy about virtual learning. Max's neurologist recommends he stay at home (this doc is keeping his own children at home, too); I have a call in to the pediatrician to discuss it. 

Given how unpredictable the virus is, it's entirely possible that in a few weeks' time or at some point this fall, our governor will declare that all schools are virtual. Max does want to go back to school, but at the same time he understands that he has to stay healthy. Every parent can only go with the decision that's right for their family. In my heart and Dave's, and in our guts, the decision is already made: Max will do virtual learning. 

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

What to do if you're new  

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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? 

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 staying.driven@gmail.com

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 jdoherty@bridgewell.org

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

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

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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?