Friday, September 25, 2020

The Disability Blogger Weekend Link-up: boom!

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: All those years of therapy and it's come to this

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

Tuesday, September 22, 2020

All those years of therapy and it's come to this

I started looking into therapy before Max had left the NICU. "Get him as much therapy as you can," the seasoned pediatric neurologist had told us, and we did—it was all we had. I reached out to an Early Intervention supervisor, and Max started getting physical therapy right around when he turned a month old. By the time he was one, he had 10 to 12 sessions a week, including private PT, OT, speech, vision therapy, aquatic therapy, craniosacral therapy and, eventually, hippotherapy (horseback riding) and hyperbaric oxygen treatment, too.

There was nothing we weren't willing to try, as long as it wouldn't pose any harm. 

Max was a pretty cheerful kid who liked hanging out with people and he went along with the manipulation of his fingers, hands, limbs and torso just fine. Horseback riding, he did not love but eventually he got into it. Therapy was second nature to him, a normal part of his routine. Other than the horseback riding, which took him a while to get used to. 

We were lucky to find amazing therapists, though good and reliable speech pros were the hardest to come by. We were lucky to find ones willing to come to our house, because I was working full-time and there was no alternative. We also found ones willing to see Max at off-hours; for a couple of years, on Thursday nights Dave drove Max 40 minutes away to see the most amazing physical therapist who would do things like balance Max on his outstretched hands.  

Time passed by. The days were slow, the years were fast. Some therapists stayed on for a long time. Some came and went, and each time I scrambled to find someone as good as before. When Max was 14 an OT told me she no longer had anything she could offer him, which bummed me out. Doctors always tell you that therapy is most important when children are young and in the physical and cognitive formative stages, but I am here to say that our children never run out of potential for acing new things, big or small. (See: Max shows us how to swim.)

It proved impossible to find a physical therapist to come to our home, and so Max has only had that at school for the last several years.  Our speech therapist has been with us since Max was about three years old, and we have a standing Saturday morning session that Max looks forward to—so much so that he insisted we do it during our recent RV trip.

We were warned, when Max went into high school, that he would get considerable less therapy than before. That's been true, but I pushed to get him an extra PT session. He has that, speech and OT two times a week each from school, plus one private speech session a private music therapy. They're all being done virtually. Finding a new OT since his last one moved away early in 2020 got paused by the pandemic. 

You know how some people dream of winning the lottery and getting a giant new house, a yacht, a personal chef? Me, I'd hire a coordinator to manage all of his therapies. 

Max has been a champ about doing therapy online. He'll hold onto a chair and crouch to do knee bends. He practices folding up paper with the school OT. He enunciates words with his speech therapist and even holds a chewy tube in his mouth and bites down on it for oral-motor exercises. 

Cut to last Friday. Our sitter was over as I had to catch up on work. Around 1:15, I texted from upstairs to remind her that Max had a make-up session with his school PT. 

"No, she cancelled," she wrote back. "We're going to the park."

I emailed the PT to reschedule. That's when she informed me that Max had emailed her to cancel the session. Wait, what?!

Oh, yes. She sent a screen shot of his email. Evidently, he had reached out to her at 11 a.m. to say—spelled exactly as he wrote it—"I'm going to Cancel today I'm going to the park after school."

She wrote back telling him to have a great day and weekend and that she'd see him next week, which is the email the sitter saw and mistakenly assumed the PT was the one who cancelled.

I was curious, and I checked Max's emails. (Bad, bad snooping Mom!) Evidently, after he sent his first email he'd had a pang of guilt and a minute later he messaged "I'm sorry." And then, after she replied, he wrote back to say: "OK thank you you are the best."  

We had a little chat. Max explained that he didn't want to have therapies on Fridays, and I totally got that—who doesn't want a day off? I told him that once in a while, it might have to happen if a therapist had to miss a session on another day, and he grudgingly agreed that would be OK. 

So there you go: Max took it upon himself to type a message to his physical therapist and cancel a therapy session because he wanted to go to the park instead. Then he charmingly thanked her. Then he advocated for himself for having a day off. 

And that, my friends, is what I call PROGRESS.

Monday, September 21, 2020

Giving your mom a haircut makes you both really happy

Back in April, when I was panic-buying stuff, I got a professional haircut kit off Amazon because I figured we wouldn't be venturing to barber shops or salons anytime soon. I never did use it on the boys, who looked like werewolves until my stepfather-in-law took pity and gave them cuts. Sabrina and I held out and then my stylist opened her own salon and cut our hair one evening before she'd officially opened, and she's since let me in early in the morning for a dye job. Dave has had cuts outdoors at places. 

When Ben and I headed to visit my Mom yesterday, I brought the fancy scissors along. I was a little nervous about using them, but I put on my big-girl panties and went to it. I spread out a garbage bag on the floor in the little sitting area near the kitchen, put a chair on it and helped my mom settle down. She's moving more slowly now; I immediately noticed that she had taken to shuffling instead of walking, and while she's as heartily cheerful as ever, her body is frail. She's always cold, so she kept on the flannel jacket she had over her housedress and I tucked a towel around her neck. 

My mom has had short hair her entire life—pixie-like, a la Audrey Hepburn. Now, it was almost down to her shoulders. I had absolutely no idea what I was doing but I wet a comb, pulled it through her hair and started gently snipping away as Ben hung on the sofa in the other room and played a video game. Mom closed her eyes and sat there peacefully, a good thing because I'm pretty sure I look petrified. 

"How much are you going to charge me?" Mom joked. I told her the cut was on the house but if she felt like tipping, I would accept pretzels or cookies (she is a snack monster). 

"Actually, it's good for me to practice on you, Mommy," I said. "Who knows, maybe this can be my backup career!" 

"Ellen, you could be a hairstylist!" she said. "You've always done anything you put your mind to!"

I mean, who in your life says things like that except your mom? 

As nervous as I was about getting the cut right and not nipping her ears, it felt absolutely amazing to be doing something for my mother, who is the most selfless person I know. She apologized that I had come to her house only to do work, and I had to keep reassuring her it was my pleasure. She asked several times if I needed any groceries: "Do you need applesauce? Do you want to take home a jar of peanut butter?" I have a lot of guilt about not being there for my mom as much as I should be—my sister is the one who visits her weekly—and while giving her a haircut did not absolve me, I was glad I could do it. 

We talked about politics and the pandemic and how the kids were doing while I did my best to shape her hair and her wispy-fine hair fell to the floor. Haircuts always look easy-breezy from the chair but figuring out the angles when you have a pair of scissors in hand, not so much. I was sweating behind my mask. 

I'd swept my mom's hair to the side for the cut. When I thought I was done, I told her she could just keep it tucked to the side. "I usually have bangs," she noted. I couldn't escape the bangs. So I chewed my lip and went for it. They were actually not as nerve-wracking as cutting around her ears had been. 

I'd sum up my handiwork as "not half bad." I grabbed a hand mirror from her bedroom for the big reveal. Mom took one look and gushed, "Ohhhhhh, Ellen, it looks beautiful! This is one of the best haircuts I've ever had!" Because: Mom. I felt a rush of happiness. 

Then she said, "I don't think I'll ever have to go to the salon again!" 

Tears sprang to my eyes, but I was crouched on the floor cleaning up so my mom couldn't see. She is up there in years, and I'm at the stage where when I call and her phone goes to voicemail, my heart catches. I pray to God that she is able to get to the salon again someday.

Mom's flannel jacket had hair all over it, so I grabbed an old roll of packing tape from drawer, wound a pice around my hand and used it to clear off her jacket. My dad, who instilled practicality in me, would have appreciated that.

Then she was urging me to get home, to avoid Sunday afternoon traffic. We walked to the stairs, Ben started trotting down and I turned up to look at my mom, waving so lovingly at me with her brand-new bangs.

Friday, September 18, 2020

The Disability Blogger Weekend Link-up got held up in traffic

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: Masks are the best tools we've got

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, September 17, 2020

Masks are the best tool we've got, and how can Trump or anyone argue with that?

I literally almost fell off my seat yesterday when I read it. The director of the U.S. Centers for Disease Control, Robert Redfield, M.D., testified during a Senate hearing that masks are "the most important, powerful public health tool we have" to combat the pandemic. "I might even go so far as to say that this face mask is more guaranteed to protect me against Covid than when I take a Covid vaccine." Why? Vaccines are not always 100% effective, he noted: "If I don't get an immune response, the vaccine is not going to protect me. This face mask will." 

Hours later, our president was declaring the director of the CDC wrong. He and Dr. Redfield had spoken, a (surely mask-less) Trump told the press, and "I said, 'What did you mean by that? I think he just made a mistake...I think he misunderstood the question." 

Oh, no. Our country's top public health official could not have been clearer: Masks. Are. Everything. 

We are nine months into the pandemic, 196,000 deaths in this country into the pandemic, 29.7 million cases worldwide into the pandemic. We are close to a million deaths around the world into the pandemic. And it is mind-boggling that anyone could question the fact that masks are our most potent weapon in fighting Covid-19, along with hand-washing and social distancing.  

I see mask debates raging on in my local mom's group, and it is troubling. The other day, someone mentioned a large group of teens hanging out in a parking lot in town who were not wearing masks or social distancing. The comments that followed were mostly of the "Yes, they should be wearing masks" variety. But not all were. 

One mom wondered if maybe we should drop the expectation for kids and teenagers to wear masks because, as she noted, "it doesn't seem to make a difference in terms of social spread, at least in our area." WHAT?! Had she not heard about the studies? Had she not seen the videos that showed just how effective masks are at containing germs? 

And then, there was the mom who said "I really wish the mask policing would stop." WHAAAAT?! When a bunch of us pointed out that caring about preventing the spread of the coronavirus does not make you the police, she deleted her comment and quit the group. Or maybe she got booted out?

Wearing a mask isn't just a health issue or a moral one. For some of us, it's also very personal. Max is at risk for complications from the coronavirus because fever triggers seizures. We've been told his breathing wouldn't be more impacted by the virus because of the cerebral palsy, but so much is unknown. Mask-less or half-masked people—the ones who wear them beneath their noses—put us and therefore him in danger. Period. Mask-less or half-masked people put all of society in danger. Period.

This half-mask thing, aka going "nose commando," is an ongoing problem. If it's someone I have to interact with, like the guy who pierced Sabrina's ears, I'll say something. The other night, Dave and I headed to a terrace restaurant at a local golf course; we'd heard the food was good. As a waiter lead us to our table, I noticed the bartender was wearing a mask below his nose. We sat down, looked at the menu and Dave considered ordering wine. "No!" I said, a little anxiously. "You do not want to order anything from that bartender." Then I decided that I wasn't at all comfortable eating at a place that let their bartender wear a mask that way. Dave agreed, and we left. Later, I left a voicemail for the manager about it.

That half-masked bartender and the many others like him, those teens in the parking lot not wearing masks and the multitude of others like them, the mothers who publicly question the usage of masks' efficacy and the many others like them: They are all going to prolong this pandemic. 

If people were asked whether they'd jump into a pool to save a drowning person, they'd say yes. But if you ask people whether they'd wear a mask to save someone from Covid-19, you might get an earful of protests or denials. And that's the problem—too many people refuse to accept that masks are life savers. 

Then there are those mask-less people who may or may not be named Donald Trump who want to make like everything is going to be OK and la-la-la-la not listening not listening la-la-la-la, which is actually going to keep everything not OK.

Trump claimed Dr. Redfield made a mistake when he said masks are the ultimate protection from the coronavirus. But make no mistake: They are

Tuesday, September 15, 2020

I'll take any bit of normal we can get

Normal, as I've learned from raising Max, is an overrated word. Ditto for "typical." We all know our kids are better than that! Unique, that's what they are, with their own special capabilities, charms and ways of doing stuff. And yet, normal life is what I've been aching for, and I got a burst of it when I picked up Ben at preschool yesterday for the first time since the pandemic began.

He's the only one of our children actually going to school, although he's doing the outdoor-only program. It had seemed fine, other than the fact that we learned on the weekend the plan was to take all the kids indoors as a group for potty trips. A few emails to the director later (I wasn't the only parent concerned) and I found out they'd made plans to keep kids outside who don't need a bathroom break. 

Nothing felt normal about Max or Sabrina's first day since they didn't go back to school, other than the requisite photos on our front porch. We did the same with Ben.  

Laying out a cute first-day-of-school outfit the night before: normal.

Figuring out which mask he should wear: a new normal that still doesn't feel normal.

The hustle to get him to eat breakfast: normal.

Having to pack a snack and plastic bottle of water in a brown paper bag because kids aren't allowed to bring backpacks or water bottles: not normal. 

The fact that we didn't notice Ben was wearing his sneakers on the wrong foot till right before we left: normal!

We were all in good cheer on the 10-minute drive to the school. I filled out the health questionnaire on the app. We pulled into the familiar driveway, as we've done hundreds of times. 

Everything looked the same. 

And yet.

Teachers were all in masks; one leaned into the car to take Ben's temperature. All the kids were in masks, their bright eyes peering out , some excitedly and some nervously. I had mine on when I got out of the car to unbuckle him, and we did a mask-to-mask kiss.

Not. Normal. So disconcertingly NOT NORMAL. 

I hadn't been back to the school since it had abruptly shut down that second week in March. I was truly grateful Ben would get to hang with friends. But I kept thinking, sadly, look how much our lives have changed

I don't have a lot of time to wallow these days. I don't want to wallow, because it's too easy to get stuck in that muck. Every once in a while, though, it hits me. What kind of normal is this? When will the old normal return? Will it ever feel like the old normal again? 

And so, I welcome anything and everything that's from our old normal. Hanging at Dave's parents house. Floortime with Ben. Early morning chats with the guy who cuts our lawn. Ordering in a pizza on Sunday night. 

I went back home after drop-off and worked for a few hours, then Dave and I drove to pick Ben up. And it was absolutely amazing.

Ben ran happily to me, as he has since the day I first picked him up there.


He was clutching artwork he'd made.


"Mommy, a boy had gummy bear juice! I want some!" he announced.

Which technically wasn't a normal statement but listening to his chatter about snack-time and the friends in his class and playing was so normal. And he gnawed on the baby carrots I'd brought, because I know he's hungry after school and that is my normal sneaky way to get veggies into him before lunch. And we got home and walked hand-in-hand to our front door.

And it was all this mom could hope for these days: Just a little bit of normal. 

Friday, September 11, 2020

The Disability Blogger Weekend Link-up: It's 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: We are onto you, buddy!

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, September 10, 2020

The karate teen

Last night, Dave and I settled down to watch Cobra Kai, a Netflix show based on The Karate Kid. Dave wanted me to see it because he's gotten Max into it—and it's inspired Max to bust out karate moves.

"Kick!" Dave will say, and Max gives a kick. "Do Cobra Kai!" Dave said, code for "throw a punch," and Max does. And then for good measure Max will give a big "hi-YAH!" and he punches and kicks at the same time with a huge grin on his face. 

This is all kinds of cool. When Max was a little guy, we tried to take him for karate lessons—we figured it would be a very fun kind of physical therapy—only he ran wailing out of the place. And here he was, karate-ing all over the place. We are going to have to figure out a way to get him lessons. Come to think of it, I wouldn't mind some, either: HI-YAH! TAKE THAT, CORONAVIRUS!!!

Max actually has a lot of force in his arms and legs—it's the cerebral palsy spasticity, and it could work in his favor for karate. Maybe it would help him up his coordination game, too, although boyfriend does land a mean punch.

I'm going to start with YouTube videos, I found a few good beginner ones. It would be quite awesome if Max got obsessed with them, because he could really use a new video obsession (fire trucks with wailing sirens OMGeeeeeeeee). Maybe we'll find a virtual class. Maybe, just maybe, I can get someone to come to our backyard for lessons. In the next couple of weeks, I have a teen coming to give Ben a softball lesson and a hair stylist coming to give my mom a trim. Backyard karate seems entirely possible and as I well know from raising Max, you'd be surprised what people say yes to if you just ask. 

Tuesday, September 8, 2020

File under: We are onto you, buddy!

For years, we've known that Max acts more independently when he is not around us, often in terms of eating. He is all too glad to let Dave lend him a hand. Until recently, we thought we had to cut up food for him. This, evidently, is not entirely true.

Sunday, we had a barbecue at my sister-in-law's. Dave and I had to head home—the boys wanted to sleep over, so we needed clothes for them and we also wanted to take Sabrina out for a special dinner since we rarely have alone time with her. We rarely leave Max alone, even with family, but it was just for a couple of hours and we figured we'd be back before the dinner BBQ. Except dinner started early, I found out. 

Text to sister-in-law: What did he have for dinner? Who cut up his food? 

Emily: He was amazing he fed himself a burger. He did really well. He cut it up himself with his fork. 


I tried to picture it, and I could see it—Max clenching the fork and carving pieces out of the burger. He holds onto utensils tightly because he doesn't have the dexterity to hold them with less tension, and that force would have come in handy for cutting. 

Text to sister-in-law: He's never cut up anything for himself before. That is incredible.

Emily: Wow he was like a pro. He also roasted up his own marshmallows.


We've seen Max holding his own stick over a firepit before—but the fact that he was doing it without us was wondrous. And never in the history of Max had he cut up his food, spear it and eat it. We've always chopped, sliced and diced for him out of concern that Max, whose chewing is impacted by his cerebral palsy, could choke on a too-large piece. But Max has gotten pretty adept at knowing how much is too much—I've seen it when he's eating.  

It's easier for Max to let us keep on helping him. I get that. Long ago, we figured out that he doesn't often let on when he's achieved a skill—like that day I dropped by his classroom when he was a kid and was astounded to see him using a spoon, which he hadn't been doing at him. And now, we once again have proof of his capabilities, which can and will be used against him! Er, to help him! 

Cutting up his food was yet another milestone in Max's evolution. It was a reminder that we absolutely need to force ourselves to step back and let Max help himself with eating. And it was just beyond heartening to know that this is yet another thing Max can DIY. 

Friday, September 4, 2020

The Disability Blogger Weekend Link-up has arrived

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: Virtual reality: making the most of remote learning

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, September 1, 2020

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. 

Monday, August 31, 2020

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?


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. 

Friday, August 28, 2020

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

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: Max shows us how to swim

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, August 25, 2020

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. 

Friday, August 21, 2020

The Disability Blogger Weekend Link-up is here for you

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: Escape by RV

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.

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. 

Wednesday, August 19, 2020

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. 

Monday, August 17, 2020

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

Friday, August 14, 2020

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).

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

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, August 12, 2020

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!"


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. 

Tuesday, August 11, 2020

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. 


Friday, August 7, 2020

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

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: Anti-worry strategies from special needs moms

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, August 5, 2020

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: 


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.



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. 


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.


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.

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.



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.  


Photo: Twitter/@joncmu

Monday, August 3, 2020

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. 

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