Thursday, October 22, 2020

Desperation is the motherhood of virtual school inventions

Recently, our adventures in virtual school and virtual therapy hit a new level of what-fresh-hell-is-this. It started in the morning, when I realized that Max was not going to be able to do the data entry spreadsheet his school had sent on his iPad, although someone who is his father who shall remain nameless had said it would work. Unfortunately that someone was away on business and I could not open it, so I grabbed my computer instead.

Max is pretty good at typing and he's done this sort of thing at school, so I had hopes. He filled out one line and announced, "I don't like this!"

I was in the middle of my workday, and did not have much time to try to persuade him. I also wasn't sure how I could—I mean, data entry: not incredibly exciting. Although I have to say, doing some mindless task that would take me away from the pandemics and politics suddenly sounded pretty good.

"It's a good thing for you to learn," I offered. 

Max looked at me. 

"It could help you get a job!" I said.

Max looked at me. 

And then, in a moment of desperation, inspiration struck. I scribbled on the form, paying tribute to Max's dream of moving  to L.A.:

And Max grinned and went to it and produced this bit of data-entry gorgeousness:

One small step for virtual schooling, one less possibility of me losing my mind. At least for the time-being, because that afternoon brought a whole other struggle.

Our sitter is around on the days when I am working, and we are lucky to have her. She's usually there to help Max with moving papers around or iPad issues. But sometimes it's me or Dave and as any WFH parent around the country will attest, that juggle is h-a-r-d. Not to mention the fact that despite 17 years of parenting Max, I am still not a qualified therapist, as became obvious.

We had picked up envelopes and adhesive labels from Max's school for him to practice working on. I'd had my doubts, and had noted that he would have trouble manipulating them. Someone there had suggested we unpeel the labels and put them on the edge of the table for him to grab. So that's what happened at the start of his OT session. 

It was an exercise in utter and total frustration. He was able to grab the label on the table, but getting it onto the envelope let alone in a corner of the envelope was hard. The OT watched through the angled-down screen of Max's iPad as he tried, at her suggestion, to do it with the envelope placed vertically. We encouraged him to use his right hand, the one he tends to forget he has. (His left hand functions much better and he prefers to use that one alone unless prompted eleventy billion times "Max! Use your other hand!"). He did but still, the labels kept sticking to his fingers. We finally all agreed this was not working out, and Max's career as a label sticker-on-er came to a screeching stop. We reassured him it was a very hard thing to do. 

But Max wasn't done. No, not Max. He had something to prove. He grabbed thehis adaptive scissors sitting on the table and he announced, "I can cut!"

Oh, my heart. I was pained—Max felt the need to prove he had abilities because he had not done well with the labels. I let the school know, as did his OT. And within a week, Team Max had come up iwth a plan for tasks that he could do (more on that another time). 

"Yes, you can cut," I said. And we grabbed one of the envelopes,  I helped him feed it it into the scissors, he chopped it up and it was supremely satisfying and metaphorical all at once. 

Wednesday, October 21, 2020

A pandemic family visit to the dentist tra la la

OK, guys, hold on, don't get out of the car yet. I have to call the office, they wanted me to let them know when we got here to make sure the other patients have cleared out.

Sabrina, can you please help Max step up onto the curb? I'm trying to find a glove or paper towel to hold the door handle.

NOBODY TOUCH ANYTHING!!!

Ben and Sabrina, walk up the stairs. Max, are you sure you want to take the elevator? Can't you just walk? No? OK, we'll take the elevator.

DON'T TOUCH THE BUTTONS!!!

Whoa. Where did all the furniture in the waiting room go? I'm not even going to ask about the fish tank. Who is setting up all the plexiglass dividers at places, anyway? At least one small business in our community is doing OK.

Phew, we all passed the temperature check. 

Bye, Sabrina, have a good cleaning.

OK, Max, you're good. 

Let me know how the tartar buildup on his teeth is. Oh, and just so you know, he wants to move to Los Angeles and if he ends up talking while you are cleaning his teeth and you don't understand him there is a good chance he's telling you that he wants to move to Los Angeles. Max, you can tell her now that you want to move to Los Angeles but try not to talk when she is cleaning your teeth, OK? People in Los Angeles have really clean teeth so it's good that you are getting your teeth cleaned!

Ben, buddy, here you go. Look, SpongeBob is on TV! 

FYI, Ben has just turned five and he is a big boy so he can handle getting his teeth cleaned while I'm in the other room. Right, Ben? Hey maybe she can count how many teeth you have. 

Oh, thank you! Wow, that's a lot. 

OK, I'm going to go get my teeth cleaned, love you, see you soon.

Um, wait, how many teeth does he have? What did she just say? 

Hi! Nice to see you. I know, we are so overdue. My last appointment was scheduled for April! I know, it's all weird. Have any patients tested positive? Well, I'm sure they have to understand if you turned them away because someone's temperature wasn't good. Maybe soon offices will have instant Covid testing. 

Wow, that metal filter on the ceiling has a ton of rust spots. I wonder how bad the air circulation is here. Oh, well.

Should I be wearing goggles too?!

The people who really scare me are the asymptomatic ones. I mean, what if one of the patients before me was asymptomatic? Those droplets could still be in this room! Sorry, I'll stop talking now, I don't get out much these days! 

Sure, you can take x-rays of my molars. 

Isn't it quaint that I used to worry about stuff like radiation?  

I'm just going to go say hi to my children while you're loading the images.

Hey, Max, how's it going? Wait, I'll hold the cup for you and then you can spit out the water. Ty to spit. Spit! Spit! OK, good job. 

I know, we try to brush his teeth but it's hard. I'll talk with the dentist.

Hiiiiii Benny! Your teeth are looking so nice and shiny and clean! 

How many teeth does he have again? 

Twenty teeth twenty teeth twenty teeth twenty teeth

OK, Ben, you're almost done, Mommy's going back to finish her cleaning.

It's nice to be able to lay back and just watch TV. When do I ever get to actually really focus on TV? Hey, aren't those judges on Chopped sitting way too close to each other? Oh, wait, filmed pre-Covid. 

I've been trying to floss. You would think I have all the time in the world to floss because I'm working from home, but honestly, some days finding time for a bathroom break is a challenge. I'll spare you the details.

Actually, I got a Waterpik during Amazon Prime Day, I was thinking that could be really good for Max, what do you think? OK, we'll ask his hygienist. 

Hi, Ben! Ooooh, Batman toothbrush, cool! OK, you can hang in front with Sabrina.

YOU GUYS, DON'T TOUCH ANYTHING!!!

Hi, Max, come sit down in the chair, I'm almost done.

Glad he did well! I can remember back when he was little and he wailed when he went to the dentist, he's come a long way. So, we got a WaterPik, do you think that would be good for Max? Yes, I think he'll be OK with the stream of water, if he leans over the sink it can pour out of his mouth. Agree, it's worth a shot.

Hi, Dr. F, nice to see how. How are you? I know, it's all so weird. 

Wait, what? I have a cavity

I haven't had a cavity in years and I get one during a pandemic?! 

2020, you're killing me. 

Not telling him about my comfort cupcake habit. 

Well, at least it hasn't hurt! Yup, I'll make an appointment for a filling, take care. 

Wow, the next time we can do a family visit is May. I wonder what life will be like by then. 

So you think I can wait till the end of November to get this cavity filled? OK, call me if you have any cancellations, I'm around HA HA HA HA HA!

It was so good to see you. Really, it was SO good to see you. Stay healthy. And sane! HA HA HA HA HA!

Yes, Sabrina, I do brush my teeth well. Sometimes you get cavities. 

Max, are you sure you want to take the elevator downstairs? OK, fine. Ben and Sabrina, we'll meet you downstairs. 

NOBODY TOUCH ANYTHING!!!

Now that I think about it, is that tooth kinda hurting? 

I need a cupcake.

Monday, October 19, 2020

The little things that can keep us happy now


Last week, Max asked if he could go to school the next morning. I told him no, not yet. I'd like it as much as he would, but we're waiting to see where the Covid infection rate is headed. The next morning, Max looked at me and said "It's pizza day!" Meaning, Thursdays used to be pizza day at his school. (The students in the building have snack breaks, but no lunch.) Max always looked forward to pizza day. Then he pointed down. "Ah, you want it to be pizza day here!" I said. "Yes!!!" he answered, and he had English muffin pizza for lunch.

Max knew just the thing that would make him happy, and he told me. That was awesome. Lately, it hasn't been as easy for me to figure out the same. Unlike pizza, happiness does not just show up on your kitchen table. Obviously, my kids make me happy (when they are not driving me batty). But a bunch of the stuff that I typically enjoy—everything from reading time on my morning commute to vacations with the family—are on hold for now. Like many parents out there, my days are extra-hectic as I juggle work, virtual schooling, and the cooking and cleanup involved with a family mostly at home all the time. It's hard to be alone, let alone do something enjoyable. My mind is too busy to even zone out to TV. 

Then someone at work made me think about something that always brings me happiness and comfort. She recommended listening to The Chronicles of Narnia on Audible. read by Kenneth Branaugh and other notables. I'd loved that series as a child. In fact, when I pondered it (as in: I ACTUALLY DEDICATED TIME TO THINKING), revisiting faves from when I was younger brings me joy in a way unlike anything else. And maybe I needed to work more of that stuff into my life. Not just comfort reads and comfort food (though there's a lot to be said about comfort cupcakes—I'll get to that in a sec), but comfort activities and comfort entertainment and the comfort of old friends.

Like the happy feeling I have doing puzzles. Someone recently gave me a Dell Express Fill-in Puzzle book. I used to do similar ones as a kid. I wasn't sure I could find the time but I started doing one while standing at the kitchen counter the day I got the book, and I couldn't stop until I finished it. For the first time in forever, I wasn't thinking about politics or the pandemic. Some weeks, I don't get around to doing a puzzle, but I am going to leave the book on my nightstand so I remember to.

Like the happiness I felt when we were driving in the car this weekend and Blister in the Sun came on and I sang the whole song. "College song!" said Dave. Totally. I made a mental note to reach out to old college friends; my plan is to call or zoom one a week. I mean, what makes you happier than college friends and college memories? 

Like the happiness I felt when I got Halloween cupcakes in our recent supermarket delivery, the orange-frosted kind topped with candy corn that I loved as a kid. They're made by Entenmann's and I think they may only be available in the NY area and I'm very sorry if you are now drooling on your keyboard.


Like the happiness I felt the other weekend at a local crafts program a friend started in her backyard, Pop Blossom Studio. I've been taking Ben on Sunday mornings. Lending him a hand as he's made a glorious pair of wings and a mobile has been fun. While he was taking a break on the swing set the other week, though, I grabbed a birch wood slice lying on the table, traced the rings with pastel paint and totally zoned out for a few minutes. I don't have much time for crafting, but it made me realize that I needed to.  

Like the happy feeling I get when I put on this retro-style watermelon lip gloss. My sister and I loved it as kids and months ago she found some and bought me a tin. The smell of it totally takes me back. 

Like the happiness I felt Saturday night when Matt, a super-nice guy in our neighborhood, had a lawn viewing of The Rocky Horror Show. As a teen, for years I'd see it every Saturday night at midnight during summer. This weekend's viewing started at 7:00; Sabrina was hanging with friends and Dave had taken the boys to his sister's, so I went alone. I hadn't seen the movie for decades but I remembered every song and how to do The Time Warp. Sitting there in the chill on a camp chair, surrounded by neighbors, I felt all warm and fuzzy. It's not exactly one to share with the kids, exactly, but next weekend I'm going to pick an old fave—maybe Splash—for movie night. 

Friday, October 16, 2020

The Disability Blogger Weekend Link-up goes on


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: When your child doesn't want your help but needs it

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, October 13, 2020

When your child doesn't want your help but needs it

I took Ben and Max out to dinner recently. We sat outside and Ben got grilled cheese, I had a burger and Max ordered steak, his favorite food these days. The cut was on the tough side so I started cutting it into small pieces. Max's chewing has improved over the years, but stuff that's chewy or too large poses a choking hazard for him. 

"No thank you!" Max said, trying to brush my hand away.

"Max, I need to cut this up for you so you don't choke on a piece," I said.

"No!" Max said, but by that time I was almost done. I poured on A1 Sauce (Max's other favorite "food") and he went to it.

This was new—Max is typically fine with us cutting up food for him. He is still glad to let Dave spoon food into his mouth. (I refuse to do it.)  Now, at 17—and two months away from 18—he did not want my help. But I had to. Max cannot cut up steak on his own, no matter how sharp or serrated the knife. 

Max generally knows how to watch out for his well-being. If he's trying a new food, he'll ask if there are nuts in it (he's allergic). If he needs a hand walking up some stairs, he'll reach out. But at times, he has a stubborn streak about doing things for himself. I have watched him attempt to grasp something he's dropped literally ten or fifteen times before he does it. 

I respect Max's desire for independence—isn't this what Dave and I have been hoping for, his entire life? But part of maturity, for Max, is going to mean letting us continue to help him when it's truly critical, and ongoing conversation, to be sure. In retrospect, I'm betting he was pretty hungry and just wanted to dig into the steak, so maybe next time we have to make sure he has an afternoon snack before he goes out. If the restaurant isn't too busy, perhaps I could ask the waiter to have the kitchen steak cut up for him. (I am having a flashback back to that time, years ago, when I mentioned that I'd ask for Max's spaghetti to be cut at restaurants and people thought that was asking too much—see The Spaghetti Manifesto.)

Max polished off most of his steak and sat there looking very content. He grabbed a cup of water and downed it easily. And then, he showed his maturity in a whole other way. 

"I'm so happy to be out to dinner with my favorite boys!" I said.

"No," said Max.

"Who's my favorite, then?" I asked.

"Daddy!" he answered.

This. Boy.

Monday, October 12, 2020

This is five


Five is nightly walks around our neighborhood in this getup—a tutu and your "long hair" (aka Minnie ears and a cape worn on your head).  

Five is being obsessed with Hot Wheels cars and tracks and playing with Barbies in your bath.

Five is saying "I am NOT going to bed! I am NOT reading books!" And then wanting to read as many books as you can until you yawn and your eyes get droopy. 

Five is cracking up at funny parts in books, like the page in Dragon Loves Tacos 2 where it says "Dragons love diapers? That's not right. Let's try again!"

Five is claiming your new big boy bed "isn't comfortable" as an explanation for why you need to sleep in ours.  

Five is squeezing your little fingers on my shoulders and saying, "Does that feel good?" Makes me melt every time. 

Five is being game to try new foods, like turkey pastrami and California roll. 

Five is thinking you know everything. Although, come to think of it, your siblings feel that way, too.

Five is asking questions about everything—why it gets dark at night, how babies get into moms' bellies, where squirrels go when it gets cold (often, our garage). 

Five is standing up for yourself and asserting: "I'M TALKING! LISTEN TO ME!" when there's a lot of commotion in our house. 

Five is learning dance moves from your big sis. 


Five is still loving cuddles, sucking your thumb when you are tired and foot rubs (best of all: getting a foot rub while sucking your thumb). You have been demanding "Rub my feet!" since you were two, and nobody does them better than Daddy. 

Five is spouting phrases that make us crack up like "That's the stuff!" when I give you candy and "That's so Donald Trump!" (I'm not really sure where that came from).

Five is the way your eyes light up every single time you get a piece of candy. Lollipops: still a food group for you.

Five is exploring the world. "Being naughty," some might say.  Like that time you woke up before everyone and decided to spritz all the Lysol out of the can. I'd left on the windowsill in our entry. Or the way you continuously rip off pieces of rattan from the table on our front porch. And when I ask if you've been up to that, you look at me with a half-smile on your face and say "Um, maybe?" and it is really, really hard to not burst out laughing. 

Five is being able to write your name, and not realizing that it's occasionally spelled backwards. 

Five is sibling rivalry with your brother. For your birthday, you asked for peanut butter cake. (Max is allergic to peanut butter.) 

Five is watching out for your brother, like asking whether he'll be able to keep up when we've gone on family bike rides. 

Five is asking if you can stay up late to watch Mad Money on CNBC with Daddy, from which you have gleaned financial information such as: "If you have lots of pennies you can buy a lot of candy!"

Five is giggling at the nonsense rhymes we make up when we're driving around.

Five is being proud that you can throw a ball really far, ride a bike without training wheels and skateboard down the hill on our street while you do a little dance. 

Five is you today, little man. You bring so much joy to our lives, and we love you more than words can say.

Friday, October 9, 2020

The Disability Blogger Weekend Link-up: weekend reading material


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: I want to walk alone, he said

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, October 7, 2020

Advocating for your child when life is totally not normal


The email I opened from Max's school the other day was meant to convey good news. Max is in the Work Experience Cluster at school, which means that during a typical year, he would have gone out to workplaces and gotten various kinds of experience under his belt. But: pandemic. There is no business as normal, so that was obviously not going to happen. Especially since Max, like several other students in his class, is learning virtually. 

Max's school has an excellent reputation and great connections, and they had managed to score a few jobs from local businesses. Each student would get their own set of materials, and the work would include placing stickers on gift bags and coffee sleeves, assembling boxes for flower vases and placing labels on envelopes. 

That sounded pretty good to me. But then, I kept reading. And the suggestions were that virtual students could, in place of the actual work, do office-related skill at home like sorting, filing or collating, or chores such as cleaning, recycling, laundry or emptying the dishwasher. 

I did not know what to think. Sure, I could find tasks for Max to do at home. But it would not truly replicate the actual jobs he would have done for businesses, and nor would it feel the same. There have been times throughout Max's life where he's been excluded from activities, camps and social groups—but this was the first time I felt that he was being excluded from a program at a school for students with disabilities. 

I sent an email to the administrators asking about what could be done for Max and cc'd our case manager. I had already reached out weeks ago to the school to ask how students doing virtual learning would be able to get job experience this year. I asked if I might be able to pick up a kit of the materials and bring it home for Max to work on. 

One of my strengths as a parent is advocating for Max. But this time around, I must have come on too strongly—especially since I had not realized the unique challenges involved. Our case manager was first to respond. In measured words, she noted that other schools have been struggling with the same. That activities that easily happen in person were difficult to move to virtual. That hopefully Max's school would find a way to enhance his skills. That we (meaning, me) exercise patience and that we all think creatively. 

I know full well that this is all uncharted territory and schools are still piecing things together. But at the same time, I wanted Max's school to plan for virtual students now, not later. The principal and his team are incredibly responsive, and sure enough I heard back soon that they would take into consideration what I'd said and get back to me, although the businesses did not want their materials to leave the school. I jumped on a call with the principal and one of the teachers the next time.

The businesses had placed trust in Max's school that the work would be done in the school, in a controlled environment, the principal explained. Dispersing materials into the homes of students, where hygienic protocols could not be controlled, posed a risk. Businesses obviously do not want to take any risks at this time. They were already extending themselves to give the school jobs for students. 

I got it. I praised the school for securing the jobs. I said I hoped they understood where I was coming from: a parent concerned that her child was going to be missing out on vital work skills, possibly for the entire school year. And I pressed on, asking what could be done for Max so he could replicate jobs being handled at school. The principal came up with the idea of Max taking on some work that needed to be done for the school, sticking return labels onto envelopes for an upcoming mailing. He offered to send those home, along with a printout of coding information Max could do, too. I was grateful. 

Dave picked up at the packet at school yesterday morning, and I looked through it last night. There were a bunch of big and small envelopes, and two pages of adhesive labels. Max does not have the fine-motor skills to peel off the labels. I sent a thank-you email, and asked if the teacher would have usually removed the labels herself for Max to stick them on, or if there was a suggested hack that might help. I asked if Max's OT might be able to help with this. They've looped her into the discussion, so that's TBD. They also sent a long list of "soft" skills Max could do at home—everything from "problem solving" to "working productively"—but did not provide concrete suggestions, so I had to ask for that, too. 

Also last night, in my relatively new job as class coordinator, I spent a half hour trying to make sense of the Zoom links for Max's classes, therapies, and after-school programs and figuring out which paperwork he'd need for the next day.

Meanwhile, I'll bet money that our schools will be all virtual by December, anyway. Already I'm wondering if maybe I'll be able to advocate for Max to get an additional year of school down the road, to make up for what he's losing during this one. He turns 18 (18!!!!!!) in two months. He has only a precious few years of school left in his life. 

Virtual learning has its challenges for students and parents. Virtual job skills: even more so. But I know, if I know anything, that there are always options and work-arounds. Raising Max has taught me that—and to never stop trying to make things happen for him. 

Monday, October 5, 2020

I want to walk alone, he said

Max and I were doing one of our joy rides around the neighborhood Saturday morning, going nowhere just to get out of the house. All of a sudden he said, "Firehouse." I assumed, as usual, that he wanted to do a drive-by. 

"OK, we'll drive over," I said.

"I want to walk!" he said.

"You want us to walk there?" I asked. It was a gorgeous fall day, and walking to the fire station seemed like a good idea. It's about half a mile from our home, and takes about twenty minutes or so. 

"No!" he answered. "Me!" And he pointed to himself.

"You want to walk there by yourself?" I asked.

"Yes!" Max said. 

Ohhhh. Hmmm. Gulp. 

"I'm seventeen!" he told me. "I'm big!" And for emphasis, he reached his arms up. 

Walking to the fire department from our house and back involves crossing several streets, including a really large intersection. Max now takes regular walks around our neighborhood, but he's never maneuvered that intersection. 

"I'm not sure, Max," I said. "That one street by the train is really big."

"I'm big!" Max repeated, emphatically. 

"I want to walk alone."

My mind was whirling. Max has matured. He knows his way around, and has a good sense of direction. He has an Apple watch, and he calls us all the time. We used to be able to track him, except it hasn't been working lately. Also: that intersection. I was also a little worried about him falling; the sidewalk is uneven in one spot on his route home. This summer, I happened to see him fall when he was out for a walk, and it unnerved me. 

"Let's drive over to the fire station and see what's up," I said. But by the time we got there, we'd decided that he was going to walk home alone. So first I did a loop around, driving the route Max would walk home. 

"The sidewalk over there is bumpy, and you need to be careful when you walk so you don't fall," I said as we drove down the block leading away from the fire station. 

Max said, "Other side" and pointed to the other side of the street. I'd thought that avoiding crossing yet another street would be good, but Max was right—better to do that than fall. 

We got to the scary intersection. 

"OK, here, you have to remember to look both ways," I said. "Like this," and I modeled doing it. 

"I know!" Max said. 

One of the fire trucks was sitting outside the station when we got there, and two firefighters were hanging outside. "Hey, Max!" they greeted us as we pulled up. Most of the guys know Max, as we used to spend quite a lot of time there. He still aspires to be a firefighter, albeit one who lives in Los Angeles, his dream destination.

We got out of the car. I caught up with one of the guys as Max walked around, checked out the truck and chatted with the other guy. 

"Max wants to walk home alone today," I said. The firefighter gave me a look, as in, "Really?!" 

And that look was all it took to convince me that Max needed to do this. If anybody should be encouraging Max and letting him take risks within reason, it's me and Dave. There are plenty of people in his life who will question his abilities and independence, including people who know and adore him. And while I may have my mom phobias and fears, I have to let Max loose. 

"Yes, he's mature enough to do it," I said. "Can you believe he's going to be eighteen in a couple of months?!" 

He could not believe it. 

"We're going inside in about 10 minutes," he told me. As in, we won't be there to keep an eye on him. 

"That's cool, he'll be OK," I said. 

Max came over, and we discussed walking home again. 

"You need to call me or Daddy if you need anything!" I said. 

"Yes," Max said. 

I zipped up his jacket. 

"It's not cold," he said. 

"Yes, but I don't want it to fall off," I mentioned, then realized I had to let him go.

Max walked back over the fire truck. 

I stood there.

"See ya!" Max said, and the firefighter I'd been talking with smiled. 

I walked to the car, then turned back to look at Max one more time. 

He slapped his leg and cocked his head to one side, his version of the eye roll. 

I drove off looking at him in the rearview mirror. Back at home, I cleaned up after breakfast and tried not to call Max. Dave came downstairs from his shower. 

"Where's Max?" he asked. 

"He's walking home from the fire station," I said. 

"Wow!" said Dave. "You think that's OK?"

"Um, yeah," I said, not entirely convincingly.

We tried calling him, but he didn't pick up. We tried again, no response. 

It had been 25 minutes. I jumped in the car. The fire station is on a one-way street, so I had to loop around. The doors were closed. I drove down the street. There was a guy sitting on a bench, alone, and I wondered if he was a perv for no good reason at all. I got to the intersection, which looked bigger than ever. I drove the whole route home, feeling increasingly panicky. No Max.  

I started driving back to the fire station again and called Dave, my heart pounding. 

"I can't find Max!" I blurted.

"He's home!" Dave said. 

PHEW. Max had gotten home pretty fast. 

Max was waiting for me on the porch when I pulled into our driveway. I flew out the car door.

"MAXXXXXXXXXX!" I said. "How was your walk?"

"Good!" he said. 

And then he asked:

"Are you OK?"

Friday, October 2, 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: Parents of children with disabilities love them unconditionally: Why don't people get it? 

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 29, 2020

Parents of children with disabilities love them unconditionally: Why don't people get it?

It happened again this weekend, when Max and Dave were having ice-cream outside a store. Max eats well enough on his own but there was no table available and Max can't hold a cup and eat at the same time, so Dave ended up spooning soft-serve into his mouth. A man passing by on the street stopped and said to Dave, "Bless you." He proceeded to explain that he had two daughters, and that he was so impressed by what Dave was doing. Dave said he had tears in his eyes. 

"He's a perfectly happy person," Dave said. "You can talk with him, if he wants to!" Max introduced himself as Fireman Max. They exchanged some pleasantries and the man kept walking. I'll bet he would have been seriously stunned if Dave and Max started suddenly karate-chopping each other, as they like to do. 

These incidents are disturbing, both because Max may soon well understand that he is being flat-out pitied and because it's painful when people expose their dated perceptions of people with disabilities. Parents of children and teens disabilities may definitely have a lot more needs to tend to then other parents do. I understand that it may be startling to see a father feeding a young man. But this is what we parents do: We nurture, enable and generally help out children of all ages and all abilities. 

These are our children
.

We are their parents.  

This kind of thinking further alienates our children from the rest of society, the age-old concept that children with disabilities aren't as lovable as others because they are "damaged" or "defective"—and that the parents who care for them are therefore super-parents and inspirations. 

It seeps into culture in many ways. Over the weekend, I watched Trump nominate Amy Coney Barrett to be a Supreme Court justice. As he discussed her children, he noted that her "incredible bond" with her youngest—who has Down syndrome—"is a true inspiration." But why is her bond with him any more admirable than her connection with her other children? Just how did Trump assess that their bond is exceptional? Again, it's that dated and wholly untrue perception that a child with disabilities is less desirable, and therefore a parent's devotion to him is awe-inspiring. 

For sure, there are days when I am wowed by what Dave and I accomplish as parents, period. Dave is an incredibly devoted father to all three of our children. And he does his best to take care of all of them, in the ways that each one of them needs. Sometimes our efforts for Max are especially noticeable to others. Sometimes, they are not visible. Nobody would ever know, for instance, that Dave can regularly be found sitting on our couch every evening with a tired Ben. "Rub my feet!" Ben will command, as he's done since he was two, and Dave obliges as Ben sucks his thumb and chills out. 

We are parents. These are the children we love and care for because they are our children and teens, not because we are saints. To call us inspirations or bless us for doing what we do demeans our children for who they: children and teens, as worthy of respect, admiration and love as any others. 

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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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 of therapy 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 became second nature to him, a normal part of his routine.  

We were lucky to find amazing therapists, though good and reliable speech pros were the hardest to come by. We were also lucky to find ones willing to come to our house, because I was working full-time. For several 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 was a shocker. I'd heard it before: I once had a standoff with a school speech therapist who wanted to quit working on Max's articulation and focus only on app-enabled communication, because she didn't think his speech would progress. It has. 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 progress and acing new things, big or small. (See: Max shows us how to swim.)

Max's last OT moved away early in 2020, and finding a replacement has gotten paused by the pandemic. It's proved impossible to find a physical therapist to come to our home, and so he 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 there. 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.

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 the 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 needed 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.

Normal.

He was clutching artwork he'd made.

Normal. 

"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. 

Me to Dave: "MAX ATE BY HIMSELF AND HE CUT UP HIS BURGER WITH A 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.

Me to Dave: "HE ROASTED 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?

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. 

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.



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