Friday, October 30, 2020

The Disability Blogger Weekend Link-up: post! Vote!

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: Everyone has their own kind of fun, and it took me years to accept that

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

Thursday, October 29, 2020

How we're trick-or-treating this year

Last night, I posted a note in my neighborhood Facebook group to ask about trick or treating. I shared our game plan—pre-bagged treats and mini bottles of bubbles laid out on a table placed at the end of our walkway, as we want to avoid kids traipsing all over our front porch and ringing out doorbell. And I asked other families to share their addresses if they were going to join in, and let people know their plans to keep it  safe.   

This Halloween, I'm balancing my urges to give my children some sense of normal with a beloved (and tasty!) tradition and not endanger them or anyone else. Some counties and cities around the country have banned door-to-door trick-or-treating. But our neighborhood has a lot of conscientious people who are good at planning things out. Back in the early days of this pandemic, we formed little groups and helped each other with grocery shopping. I wanted to explore how we could swing this with social distancing.

I know a lot of kids won't be going out at all, because they are high-risk or because they're quarantined. That happened to a friend—her sitter got the coronavirus this week, and her family's quarantining for two weeks. Ben and I are going to drop off some goodies at her doorstep, and I  suggested that perhaps she could turn the day at home into a day of treats—sweets for breakfast, watch Willy Wonka, make orange-tinted cupcakes. I know, from my experiences with Max, that even if Halloween isn't what you expected, sometimes it can be just as great. Back when he scared of our town's Halloween parade, I'd hang in our backyard with him and push him on the swing then we'd down ice-cream sundaes. (He has come a long way since then—here's a look back.) 

Max still isn't a candy person, but he does get a kick out of gathering as much as he can. He will be wearing his L.A. Fire Department cap and a Los Angeles t-shirt because he is dressing up as someone who wants to move to L.A. Ben is going to be Flash Gordon. Sabrina is going to just go hang outdoors with friends. They'll all be in masks. To make sure Ben doesn't touch any candy until he's home and has washed up, I'm going to bring some extra treats in my pocket. I'll be toting a bottle of hand sanitizer, too. 

By this morning, my Facebook post had gotten 20 comments and it seemed like we'd be able to pull off a fun and socially-distant experience for our children. Some neighbors were setting up slides and tubes for food and non-edible treats, to avoid close contact. People are getting really creative: "We have an amazing catapult that shoots the things to the street! And an amazing zombie treat-slide!" wrote one. 

A candy chute created by my friend Amy Oztan of Amy Ever After. Genius!

Like us, some neighbors will be spreading out bags of candy on a table. Others will put it on their lawn or, in one case, tree stumps. One guy, who sets up an awesome lit alien spaceship on his lawn every year, noted that he will be having a one-way line for candy. 

Halloween this year may be different, but it's looking like it can still be plenty sweet. 

Tuesday, October 27, 2020

Everyone has their own kind of fun, and it took me years to accept that

Friday afternoon, we went apple picking. I'd called ahead to find out what time the fields would be the least populated and booked a time slot. The other thing I did to prepare: I accepted that Max wasn't going to do it.

Family outings have always been somewhat of a challenge, both when it was just Max and Sabrina and even more so with Ben. It's not easy finding one thing that everyone will enjoy; on weekends, Dave and I often go our separate ways with the kids. Max has never loved apple picking, but I thought it would be good for him to get some fresh air and a change of setting, too.

I just wasn't sure how it will all work out, but when we got there and a staffer showed us a map of where there were still a good amount of apples to picked I noticed a gazebo. Boom! Max could chill there with me or Dave, and then the rest of us would go pick apples.

When Max was a little guy, I struggled with activities and outings. I desperately wanted him to be part of the fun. I wanted us all to do typical family outings because nothing felt typical and why couldn't Max get into apple picking or going to the children's museum or whatever? Hadn't the neurologist told us to expose him to as much as possible to open up his mind? 

We tried and tried and tried. Over the years, Max didn't just grow into some things, he grew to love them, like going to the movies and sometimes the theater. Some museums, too, especially if there were fire engines involved. But apple picking: not so much. "It's borin!" Max said when I asked him if he'd want to come. It's very possible that it's also not fun because it involves reaching up and grasping, two movements that don't come so easily to him. 

As a parent whose development has come a long way, I now know that it is absolutely no reflection on Max or on our family to be a family that conquers and divides when it comes to activities. Things are no less fun for anyone—in fact, they're more so when everyone is doing just what they want even if it's a different sort of fun than many other families have. 

And so it went. We all walked down the dirt path to the mostly empty fields and Max and Dave (also not the biggest fan of apple picking) headed toward the gazebo, where they hung out to review Max's fantasy plans for moving to L.A. Sabrina, Ben and I cruised up and down the rows of apples, and as it turned out we had to walk pretty far to find trees that still had some. We also stopped for a bazillion photo opps, which Max would not have much appreciated, either. 

Ben was giddy about picking actual apples of actual trees, and fascinated by the mushy ones on the ground. Sabrina was excited to be somewhere that wasn't her room. I enjoyed a rare few minutes of peace and calm and no worries about germs.

A half hour later, we returned to the gazebo to show off our bounty. Dave and Max headed back to the car, and Sabrina and Ben played hide-and-go-seek in another patch of apple trees. 

We met up in the parking lot. Max has a thing for apple cider, and he and Dave picked up a gallon of it. "It's very so good!" said Max, one of his favorite phrases. 

And our day was very so good, for each one of us.

Friday, October 23, 2020

The Disability Blogger Link-up wants you to read...and vote

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: A pandemic family visit to the dentist tra la la

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, 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.


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.


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.


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. 


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.

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