Wednesday, May 27, 2020

Personal protective equipment for children and teens with disabilities

"Mask!" Max says whenever we go out. He totally knows he needs to wear them and he's gotten used to it,  even if at times he announces, "I hate masks!" I hear ya, buddy.

The masks are necessary, of course, to ensure that he isn't spreading germs. They also help with the fact that Max has excess saliva, and this is not a time when people are going to be comfortable around anyone with that particular issue. Max uses scopolamine patches to help control it and they help to some extent, but not completely.

A couple of neighbors have made fabric masks for us, with elastic at the ears. Sewers around our town are also making them—I've seen them being sold for children and adults on local Facebook swap groups. We're lucky that Max's sensory issues have dwindled, and that he tolerates masks. I know it's been a challenge for some children with sensory needs and autism. Writer Shannon Des Roches Rosa finally had to get a note from her son's doctor explaining that he could not wear a mask because of his autistic sensitivities.

Max isn't going out to stores or any enclosed public spaces anytime soon so cloth masks are fine; mostly, he rides his bike on our street and takes the occasional walk. We also have some surgical masks from before all this started, which I used when I cleaned the house, so they've come in handy. Dave and I are going to venture out one of these days (my baby step was a garden center last Friday), so we've picked up KN95 masks. These are similar to N95 masks and offer filtration, but you have to be careful about buying them from a good source. I've found ones at ACS Materials for a reasonable price (the website Duvely is a total scam, more on that another time).

We just got a batch of plastic face shields—$2 each at InstaShield,  and they slip right over any baseball cap, so they could be a great mask option for children with sensory issues. I like them because they cover your eyes, too. They're easy to clean with soap and water and reusable. (Here's a good piece in The New York Times on face shields.) For whatever reason, Max actually loves them and has taken to wearing them for walks around the block.

Weird. New. World.

Tuesday, May 26, 2020

The point of reentry: On venturing into the world again

It was a fern that helped me get past my reentry fears, and a couple of neighbors. Our family hasn't been to a store for two and a half months now—food, supplies, whatever have been delivered. We live in New Jersey and our state still hasn't fully reopened, although it's in the works as the number of coronavirus cases has declined. I've been dreading going out to a store. 

Last week, I walked by my friend Emily's house and she had a pretty fern hanging on her porch. Usually by this time of the year, our porch is decked out with flowers and greenery, but it's been bare and kind of sad-looking—to me, anyway. Suddenly, I ached for a fern. Even more, I ached to go out and get one. The next day, a neighbor walked by with his dog and we got to talking. He told me he'd picked up some nice plants at a nursery located in a wildlife refuge about 20 minutes away. Hmmm. Could I? Should I? 

What cinched things was seeing my neighbor Kirsten, who's an EMT. I asked if she thought it would be OK to venture to an outdoor garden center. She gave me the (green) thumbs up, and explained her M.O. for going out to stores: Just one credit card in her pocket, no wallet. Phone in her jeans pocket, not to be touched. Take your gloves off and toss them before you get into the car. (Her volunteer squad made this really helpful video about safely removing gloves.) Disinfect your car key with a wipe. 

I decided it would be safest to be at the nursery as soon as it opened. And so, I was one of the first people there Friday morning at 7 a.m., gloves and N95 mask on. (My father-in-law had construction done at his home and he'd given us a few.) It was just me and some seniors roaming around the great greenhouse outdoors. 

I always find trips to nurseries relaxing because: pretty things. Also, I usually don't take the kids, which automatically makes any outing more chill. This time, though, I felt something I'd never felt before: freedom.

I got a nice fern  put into a basket I already had. I treated myself to a new planter with flowers. I got a pot of begonias for the table on our deck. I waited on line a good ten feet apart from the next person. And I drove back home feeling relieved that everything had gone OK, and totally happy.

Greenhouse: Flickr/kenfromMD

Friday, May 22, 2020

The Disability Blogger Weekend Link-up: Better late than....

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: What makes you cry

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

Note: Your post will be removed if it is for commercial purposes or does not pertain to disability.

Thursday, May 21, 2020

What makes you cry

I knew it was coming. But still, it was a shock to my system. The summer camp that Max and Sabrina attend—different locations of the same one—were cancelled yesterday morning. I cried when I told Dave. I emailed one of the camp directors and told him I'd cried. He said he cried, too. So then I cried some more.

The messages made my heart ache: "We had hoped and prayed not to have to write this message...." "With tears in our eyes and broken hearts, we announce the cancellation of all scheduled sessions.... " "This is a decision born from one of our most sacred and core values as an organization: the health and safety of our camp community...." "Words can't express the sadness of having to do this for the first time in the 70-year history of our organization...."

This would have been Max's fifth year in the program, and the first time it was going to happen for the full summer.  He has been going to various camps since 2011—that's where is he is above at age 8, the photo the camp sent me to stop me from freakout out because I was so worried about how he was doing I emailed incessantly. This would have been Sabrina's sixth summer at camp.

There were no tears on Max and Sabrina's end, only mine. Max immediately said: "Next year?"—so typical of him. He also asked if we could go to L.A. He's been connected with his fellow campers these past two months because Orlee, the awesome program director, has been doing Zoom calls. Sabrina was bummed—it would have been her sixth summer at camp—although last night her camp division did a Zoom meeting and it is possible there will be some virtual activities. It is also possible I will spend the entire summer arguing with her over why she can't go to Great Adventure on the like.

I cried for the lost chunks of their childhood and for all the lost time in their lives. The lost school interactions, sports teams and games, school events and parties, actual playdates and hangouts, going to movies and plays, simple pleasures like grabbing ice-cream with friends or cruising the mall. The loss of in-person therapy for Max. The loss of freedom and innocence. The loss of life as we knew it.

Like many, I've also cried over stories in the news and when the numbers hit awful milestones: 10,000 in the United States, dead; then 50,000; we're now rapidly heading toward 100,000. Worldwide, there have been 328,000 deaths from the coronavirus and five million cases. A few times in the last month, I've burst into tears for no reason; other friends say the same has happened to them.

I fully realize how fortunate our family is to be sheltering at home, healthfully. Not going to camp is far from tragic. Even if camp was happening, I probably wouldn't have sent them. Still: the reality sucks. And, so, I mourn this lost chunk of their childhood. And I mourn the loss of another opportunity for independence and socialization for Max. He hasn't just thrived when he's been away at camp, he has bloomed. I mourn the loss of Sabrina's independence this summer, too. (Also: mine.)

And I am praying I can keep them entertained this summer. Um. 

Wednesday, May 20, 2020

In which Max uses two hands and I get extremely excited

"Two hands, Max, two hands!" is a phrase you're likely to hear at our house, along with "The remote's lost again!" and "What's that smell?" Max naturally prefers to use just his left hand, the more functional one. The stroke he had at birth was worse on his left side, and the left part of your body controls the right. It's made his left hand the dominant one, and the right one the one he often forgets he has.

Max will do anything to avoid using his right hand. Even if he drops something on the floor and it would be way easier to grasp with two hands, he will doggedly attempt to pick it up with his left hand alone until he succeeds and then cling to it for dear life. He has learned to use two hands to drink from a cup, but that's about as far as he'll go unless we prompt him.

The other day, I was sitting on our porch in the afternoon. We've been getting Max to help more around the house—he's in charge of cooking eggs in the morning—and I decided to ask him to bring in our little safety dude. It's this thing, the Step 2 Kid Alert sign, which we put on our street when the kids ride their bikes:

Picking it up with one hand isn't easy. I wasn't really sure how this would go. For once, I decided to not shout "Two hands, Max!" to see how he'd do.

He tried to lift it with one hand. Nope. He tried and tried but: nope. And so, two hands it was. Squee! I watched in amazement as he held little dude high and walked it all the way down the driveway to the garage. He had a proud grin on his face the whole time.

That. Boy.

Tuesday, May 19, 2020

At least one thing we can count on these days

Remember when you were a kid and your teacher took the class outside during spring and how excited you were? That's what yesterday was like. Max could not have been more thrilled to get outside. This boy is all about warm weather—he can't stand the cold, as he reminded us all winter long. He is also going by L.A. time these days. I mean, he shows up on time for class and all but otherwise informs us that he is going to sleep at, say, 6:00 when it's 9:00 here.

I have taken Max's schooling for granted all these years. These days, though, it's a godsend. It engages him and keeps routine in his life, something that's a struggle at our house. It's also all the socializing he gets these days, other than Zooms with our family and family friends. I am so grateful Max is into it.

With everything else in the world so overwhelmingly uncertain and up in the air, we can count on virtual schooling. Class may be short-ish— from 9 to around 11:30, with therapies sometimes scheduled in the afternoon—but overall, it's great. Ditto for Sabrina, who gets the full amount of usual school time. Ben is getting just 45 minutes of preschool class time a week, a bummer for us all.

Max's amazing teacher has been going to his school, making copies of worksheets and mailing the packets to families. On Sunday nights, she emails his homework for the week and I print it out. So far, so good, even if we don't always get to the homework. (See: "struggle at our house.")

We had Max's IEP last week, and overall it went well but it raised big questions about the next school year. He has the option of choosing a program through which he'd get work experience. Max was eager to do it, but the assistant principal warned us that we don't yet know what kind of job options would exist. And then, there's the fact that I am not sure Max could even return to school in the fall, if it does open, as he is considered high risk for complications from the coronavirus. If that happens, what kind of education is he entitled to still receive at home? How would that even happen—he'd watch a videotape of the class in progress? I've asked to have wording put into the IEP that there would be a reevaluation, depending on the status of school in September. 

For now, I'm focusing on the fact that schooling is working out. I hope it is for your child, too. 

Day by day, people. Day. By. Day.

FYI, here's a great segment from PBS NewsHour on the challenges parents of kids with special needs face with virtual learning. One important takeaway: Save samples of your child's assignments and work, to document how they've been doing—and to show any potential regression, in case.

Monday, May 18, 2020

We all deserve birthday cake any day, says Max

"Aileen is bringing over a birthday cake," says Dave. "Ice-cream, I think."

He mentioned this over the weekend. None of my kids have birthdays in May, so I was a little stumped by why our babysitter as dropping off a cake.

Turns out that Aileen had texted Dave to see if we needed anything—she is one of the sweeter people in the world and has occasionally dropped off home-cooked food for us. Dave asked Max what his favorite food is.

"Birthday cake!" he announced.

So Dave told that to Aileen. And she decided she was going to bring Max birthday cake, and the next thing you know, there was a lovely ice-cream cake sitting on our front porch. Vanilla and chocolate with crunchies.

My kids have been bummed that we aren't going out for ice-cream. We surprised them with the cake last night, and it was an awesome burst of bliss. Ice-cream cake just because! And why not? If this pandemic has made me aware of anything (besides HOW LOUD MY FAMILY IS), it's to be grateful for the days we have on this earth. Life is definitely something to celebrate with your children right now.

I also felt grateful for our babysitter/cake fairy. 

Max grinned as he downed his cake. 

"It's not my birthday!" he noted.

"Yep, we're just enjoying yummy ice-cream cake," I said. "Aileen was so nice to get it for us, she heard it was your favorite food."

Max agreed.

Our cake fairy has a good sense of humor.

Friday, May 15, 2020

The Disability Blogger Weekend Link-up is always open for business

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: Stuff keeping us kind of amused and sane this week

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

Note: Your post will be removed if it is for commercial purposes or does not pertain to disability.

Thursday, May 14, 2020

Stuff keeping us kind of amused and sane this week

Butterfly release! We've gotten several Insect Lore butterfly gardens for the kids over the years, and it is always a thrill. First, you order the netted habitat and get a cup of caterpillars delivered in the mail. Over the course of a week, they eat the food in the jar and turn into cocoons. Then you transfer them to their home and about seven or so days later, butterflies! When we did the release, three flew out right away and one decided to be a homebody so we had to coax him out. Max wanted the butterflies to fly to L.A. Ben wanted them to go to his teachers' homes. There was some drama. The look on Ben's face when he got to hold one: priceless. And yes, I agree, those boys sure could use haircuts!

Continuing with the butterfly happiness: Sabrina and Ben made me a butterfly wall for Mother's Day in our kitchen from downloads they colored. I'm keeping it!

Liquid droppers. We've been using them to grab food-dyed water from big bowls and plop it into other bowls with clear water. Simple, but fun. These are little guys, just over three inches tall; a turkey baster would also work.

Car joy rides with Max. Sometimes, our whole family cruises around our neighborhood. Like a road trip, it's a change of scenery and a chance to check out the sights—i.e., see which stores have opened up again and ponder why people still aren't wearing masks.

An at-home pedi treatment. My friend Lyla, who always knows about good stuff, told me about Baby Foot; it's an exfoliating foot peel. My heels have been Sahara-ish, who knows when I'll be able to get a pedicure again and I actually had time to wear the little goop-filled booties last weekend. Your skin proceeds to magically shed in the ensuing ten days. So far, so smooth!

Taking time to take in the azaleas. Seriously. My life is such a whirlwind (have you heard the phrase "blursday"?) that I haven't truly enjoyed spring. But this week I sat on our front steps and gazed at our just-bloomed azalea bush. I hope you have flowers in your front or backyard bringing you happiness so that when you walk back into your disorganized, toys everywhere, gotta-get-around-to-washing-the-kitchen-floor-one-of-these-days house (er, that would be me), you feel a little more peaceful.

Tuesday, May 12, 2020

Developmental delays is a bad phrase, and the proof is in our children's progress

Electronic devices like Alexa and Siri don't speak Max. In our house, Ben has taken on the role of being Max's speaker whisperer. Most commonly, you'll hear Ben say: "Alexa! What's the weather in Los Angeles for the next week?" which delights his California-loving brother every single time.

Max recently had a communication breakthrough, and we have the excessive amount of screen time my children have been consuming to thank for it! OK, not really, but I'm trying to make myself feel better. It turns out that you can speak into the remote control for our Samsung TV to change channels, something I never knew but evidently everyone else in my family did. And it turns out that when Max says "Netflix!" into the remote, it does his bidding. This is pretty cool. Consonants are challenging for him to articulate, and the fact that the device can discern the "n" or "t" or "f" or "x" is exciting. Even more thrilling is that a few consonants are becoming a little easier for him to say.

One thing I could have never imagined when Max was little is that the progress would not stop. The words "developmental delays" seem inherently hopeful—hey, it's just a delay! It's often a word parents cling to when they don't want to face the fact that their child has a disability. But the truth is, "developmental delays" is all about the end goals of typical developmental milestones—ones our children may never reach. It touches on our deepest anxieties about them. It gives us false hope. The best thing we can do, as parents, is to try so hard not to obsess over milestones, focus on the inchstones and help our children max out their unique potential.

That is hard. Really, really hard. In the early years of raising Max, I ached to get to that developmental finish line—I wanted him to crawl, walk, talk, read, do All The Things. And he has achieved so much in his lifetime, despite the gloomy predictions of doctors in the NICU. Speech has been the most slow-coming, due to the parts of his brain where the stroke struck. I was told, years ago by a speech therapist at Max's old school, that she wanted to focus solely on technological communication because she didn't see his speech progressing. I knew that wasn't true—and that Max still had plenty of potential. Now in his seventeenth year and my seventeenth years as a mom, it's acutely clear that Max's speech and powers of communication continue to progress. That will likely never stop.

Forget you, "developmental delays." I'd say "Evolving child" is more like it. Or "child in progress" or "person in progress." Aren't we all?

In other exciting communication news, I got an email from Max's current school speech therapist last week saying how proud she was of him. He'd been telling his class something during a Zoom session, and when nobody understood what he was saying he figured out how to use Zoom chat on his own.

I emailed back to ask what he'd been telling them.

"He told us that it was 93 degrees in L.A," she responded.

I laughed when I read it, but really, I was amazed.

Monday, May 11, 2020

Quarantine joy ride

Max and I have been going on joy rides around the neighborhood. Car rides are always a great place to chat with your children, and Max is no exception.

"I hate this!" he announces as we drive by a family in masks.

"You hate wearing masks?" I ask.

He nods. He hasn't really said much about the whole situation.

"You know why we wear masks, right?" I continue.

"Virus!" he says.

"Yes," I tell him. "Masks stop us from spreading germs to other people."

"I hate virus!" he says

"I do, too," I tell him. "Let's say it together: THIS SUCKS!"

And together we yell, "THIS SUCKS!"

We laugh, then we're quiet for a few minutes. It's quiet on the road, too, eerily so. We pass the tricky intersection en route to Sabrina's school, and I consider how it feels like such a long time since Dave or I drove her there. Everything normal feels like it was so long ago. This is our eighth week of quarantine.

"When are you going back to work?" Max wants to know.

"I'm not sure yet, honey," I say. "I'll go back when my company says it's safe to go back."

"I want to go with you to New York!" he says.

"That would be great to do that again," I say. He came with me to my office a couple of summers ago, and loved it.

Max has been amazingly mature about everything so far, including when we told him that the week-long camp he's been going to for years isn't happening. "Next year?" he asked, and I was bowled over by his positivity. This. Boy.

Max is quiet, once again.

"How does the virus make you feel?" I ask.

He doesn't answer.

"Does it make you sad?" I ask.

"Yes," he says. "L.A."

"You want to go to L.A.?" I ask.

"Yes." He nods, vehemently, and his eyes fill with tears.

"Awww, Max, I know it's hard," I say. "We can't go on trips right now because of the virus."

"I know," he says. "Can we go to L.A. in three weeks?"

"I don't think so," I tell him. "The virus is in L.A., too."

"It's not!" he says.

"Yes, it is. The virus is all over the world, but our family is OK," I say. "You can go back to L.A. when it's safe."

"I will!" he tells me.

"Let's go home now, Daddy is making a barbecue!" I say.

He gives me a look. Ooops.

"Oh right, this is not your home. Los Angeles is your home."

"YESSSSS!" he says and flashes me a grin, the one that always brings the sunshine.

And we drive the empty streets back to our home-not-home and everything is weird and surreal but we are OK.

Friday, May 8, 2020

To special needs moms on Mother's Day: You are more mom than ever

Dear Mom (that would be you),

I know that you had plenty on your hands before this pandemic started, and that you were already working mom overtime. An analysis of all the jobs that we do—from patient advocate to speech therapist assistant—determined that we deserve a salary of $828,836 a year, although really everything that we do is priceless.

I know that even though you were already at max capacity before the pandemic, somehow you are managing to do even more. You are overseeing your children's schooling at home, from printing out pages to sitting with them through virtual lessons. You are trying to make do with some virtual therapy sessions and also doing your best to fill the void created by the lack of visiting PTs, OTs, speech therapists, ABA specialists, and more.

You are doing the best to fill all the free time your child with disabilities has while juggling your other kids, a household even messier than usual because everyone is home all the time, more laundry, more meals, more everything. All the while you and/or your husband are juggling your jobs. All the while as you struggle with your own anxiety about coronavirus and the unique dangers it can pose to your children, and how you'll possibly be able to send them back to school.

I know that you probably have always had guilt that you are never doing enough for your child and now, you may feel that you are failing your child. You can't do all the therapeutic exercises, or you can't even get to any of them. Your child is having too much screen time. You're not fully prepared for class. You're not able to get to the homework. Maybe you feel that you aren't giving your child enough attention. (See: TOO MUCH TO DO.)

Maybe your patience is running a little bit thin, or more than a little bit thin. Maybe you've cried in front of your child. Maybe you've totally lost it. Maybe there are days when you'd like to hide under the covers all day long. Maybe that's every single day.

I know, friend, because I am you. And however much you are struggling or feel like you are failing your child, you have to remember the code by which we special needs moms live by:


And your best truly is good enough—anytime but especially now, when so much is pummeling your your stamina, your spirit and your very soul.

Your child benefits from therapy and therapeutic exercises, for sure, but he will continue to do so in the months and years to come. And you already know this but it can't be said enough: Therapy isn't just exercises the therapists give you to do. Narrating your actions as you make breakfast, lunch or dinner is therapy. Or walking your little one around the house as he perches on your feet. Or playing pat-a-cake. Or getting a teen to articulate thoughts about a video they're watching. Or playing a board game as you hold your hand over theirs to grasp the pieces. Therapy is any number of everyday things. (Except maybe when you all screech at each other over the lost remote control.)

You know that your child feels your love—that's never in short supply. And feeling cherished gives children the confidence and encouragement to keep on progressing. Those kisses and hugs are therapeutic.

This Mother's Day, you deserve to be celebrated more than ever. I am sending you hugs and sunshine and unicorns and strength and virtual chocolate of your choice.

You are as mom as you ever were—and more mom than ever.


A fellow mom who knows

The Disability Blogger Weekend Link-up has reads for you

What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

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Wednesday, May 6, 2020

What's happened during 76,320 minutes of extreme family togetherness

A local photographer snapped this picture of us for the Front Porch Project. We've been quarantined for 53 days now—76,320 minutes of extreme family togetherness. It's amazing how happy we look. Sane, even. Whether or not some of us had underwear on, who knows.  

Although we haven't done that much in these past seven weeks, it sure feels like we have lived a whole other life.

• We have cried—because of mean sibling things, frustration, the news. 
• We have had meltdowns. The grownups, too. 
• We have hugged the anger, hurt and fear away.
• We have yelled.
• We have yelled at each other to stop yelling.
• We have Zoom worked, Zoom schooled, Zoom girls-night-outed, Zoom playdated, Zoom family reunioned, Zoom cocktail partied, Zoom pajama-partied, Zoomed up the wazoo.
• We have cheered because we landed a grocery delivery slot. 
• We have stayed up way too late on school nights.
• We have stayed up way too late every night, who am I kidding.
• We have discovered that every single one of us is excessively loud. How have we never realized until now just how LOUD we are? 
• We have washed our hands more than we ever thought humanly possible and created soap messes and glop on the sink countertop previously unseen.
• We have waved at grandparents from behind our closed front door, then devoured the meatballs they left on our porch bench. 
• We have not maintained social distancing from the snack drawer and we really should.
• We have forgotten what day it is and we don't really care. 
• We have finger-painted, dyed beans pastel colors, experimented with a turkey baster, water and food coloring and despaired that other parents are so much craftier and that our children are missing out. (OK, that's just me.)
• We have announced, "Stop using so much toilet paper!!!" (Also me.)
• We have read not nearly the number of books we thought we would given all the "free time."
• We have used up our lifetime allocation of screen time.
• We have gone for a drive around our neighborhood, just for thrills. 
• We have mandated that everyone has to wear their pajamas at least two nights in a row, bonus points for more, to ease up on the laundry situation. (Just me, again.)
• We have celebrated a birthday by bringing in a steak dinner, even if the birthday boy ended up having a freakout about whether we should have brought food in. 
• We have photo-bombed virtual classes, purposefully and accidentally. 
• We have taken comfort under the covers when we've felt sad. 
• We have noticed all the smudges on the windows and stainless steel appliances when the sun streams into the kitchen. (You can bet this is just me.) 
• We have not gotten haircuts for many weeks and are rocking the caveman look for the indefinite future.
• We have fantasized about our next family vacation.
• We have fantasized about just going out to a restaurant. 
• We have skipped baths and showers because after all, our hand are sooooooo clean. 
• We have eaten our body weight in potato chips.
• We have worried whether we'd be able to get our hands on more potato chips.
• We have accused each other of hiding the potato chips.
• SOME of us have given up on making our beds which feels like the end of civilization to SOME of us but, whatever. 
• We have slept in the basement on blow-up beds for an exciting "trip."
• We have gotten on each others' nerves and nerves we didn't even know we had. 
• We have played with Legos, puzzles, board games, marble runs, All The Games and somehow nobody ever wants to do anything for more than six minutes. 
• We have lost the TV remote control way too many times to count. Like, every single day. Perhaps you've heard one of us shouting "WHERE IS THE REMOTE CONTROL?!"
• We have been excessively grateful for our bikes, our barbecue and our backyard. 
• We have been excessively excited when our mail carrier shows up.  
• We have gotten stains on practically every piece of furniture and every rug in the house.
• We have somehow managed to have one kid who puked all day long, despite the fact that we have not come into contact with any other human being for weeks. 
• Did I mention the loudness? 
• We have gotten so very tired of fart jokes, except the four-year-old. 
• We have tried to hide from each other in various parts of the house but inevitably, we get found.
• And we have also found so much comfort in each other's company and savored the safety and security of being at home and felt much gratitude for the first responders and essential workers who risk their lives every day to save and benefit others'. And we keep right on wondering when this will all end. And then we go right back to yelling about the AWOL remote control.

Tuesday, May 5, 2020

All the lonely people in group homes—and one guy you could help

I saw a neighbor of mine the other day. Her niece lives in a local group home, and I asked how she was doing. Her parents weren't allowed to visit, which was tough. "But the people there are like family to her, so she's doing OK," my neighbor said.

That was good to hear, especially because of a message I recently received from a lawyer friend who works with families of people with disabilities. She'd shared a message a mom had put in a group chat asking  people to send her son a note, who has intellectual disability and who lives in a group home. "He loves bowling, vacations, eating out, Dave and Busters, cats and dogs, space, Star Wars, SpongeBob and Ninja Turtles," the mom said. "I have been unable to see him the last few weeks and I think it may be a bit longer."

A couple of weeks ago, I wrote here about developmentally disabled people in group homes in New York dying from Covid-19 at a far higher rate than the general population. But what's also sweeping through both nursing homes and group homes is loneliness. My lawyer friend noted that parents are being told they can't see their adult children at all, which their children can't understand. Truly heartbreaking.

The Girl Scout troop I lead has written to a local group home and a nursing home. I asked the girls to write a note to this young man. Our family sent one. And now, here I am, asking you to mail him a note—his mom wanted me to share the mailing address, and would truly appreciate any and all notes.

2204 Morse Avenue
Scotch Plains, NJ 07076

It's so simple: Send a note to this guy. Or have your kids write one or draw a picture. While nobody can replace his mom, it will surely help him feel less alone.

Monday, May 4, 2020

Riding the pandemic away

"Mask!" Max says.

He's asking me to put one on him, so he can go outside and ride his bike. I hook the elastic pieces over his ears, slip one on over his nose and mouth and walk him outside. In the garage, I strap on his helmet, help give him a hand with straddling the bike and he's off. 

Max has had this bike for more than eight years now, a Triaid TMX. He was the beneficiary of a good deed project through the Friendship Circle. Next to the gait trainers that helped him learn to walk, this bike been the best piece of adaptive equipment he's ever had and it's grown with him. Last year, he used his bike to help Ben learn how to ride one. This year, we got it tuned up and it's keeping him happy and calm during the pandemic. 

I am beyond grateful. One of my biggest anxieties when this whole thing started was how we'd keep Max occupied other than with TV and YouTube fire station videos, which he would gladly watch for hours on end. But Max has figured out how to keep himself occupied, a true sign of maturity—and it's really good for him, too.

Out of all of us, Max has been getting the most exercise in the seven weeks that we've quarantined. He rides up and down our block for hours at a time, expertly making turns in our driveway. He goes out for rides when it's chilly and even when it drizzles. Sometimes, he and Dave cruise around the neighborhood and on occasion, Ben comes along.  

Dave or I sit on our porch, keeping an eye on him. We have one of those "kid alert" signs we prop in the street for cars, although few come around these days. When people walk by, Max steers clear, social distancing like a pro. 

Ride, Max. Ride. 

Friday, May 1, 2020

The Disability Blogger Weekend Link-up doesn't require disinfecting

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: Stuff keeping our family somewhat busy, mostly sane and kind of hopeful

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.

Note: Your post will be removed if it is for commercial purposes or does not pertain to disability.

Wednesday, April 29, 2020

Stuff keeping our family somewhat busy, mostly sane and kind of hopeful this week

Sensory play beans. I excavated a few bags of expired dried beans from our basement recently, and I had just the thing to do with them thanks to a mom in Ben's class who's an art teacher. You just need food dye, too. Put beans in separate clear baggies, add a squirt of gel food dye or a couple drops of the liquid kind to each and put in a tablespoon of white vinegar or rubbing alcohol (it helps the dye stick to the beans). Seal the bags then shake them up—in a minute or two, the beans will soak up the color. We spread out ours on a baking sheet lined with wax paper, divvied up by color. They dried within the hour. Then we had fun spooning them into an empty eggshell carton. Next time around, we're going to pour some into a bowl and put in Matchbox cars, tiny figurines, and other little treasures to dig around for. Disclaimer: Don't be fooled, I am NOT a crafty mom but this was easy-peasy.

Disability victories. I can't say that I am a fan of Betsy DeVos, but this week she did the right thing and did not free schools of their special education obligations in her report to Congress. In other good news, our state issued a policy stating that if a person with intellectual disabilities or behavioral issues is hospitalized due to the coronavirus, a designated support person is allowed to visit. New York State also updated their visitor policy to include support persons for people with intellectual or developmental disabilities or those with dimentia.

Discounted car insurance. The other day, as I stared at our two cars sitting sadly unused in our driveway, it occurred to me that we should call our car insurance company and ask for a discount. Turns out they were offering customers a 20 percent reduction for April and May. People have told me that Allstate gave them 15 percent off for those moths, and Geico was offering 15 percent as well. Check into it.

Didn't catch the salute to Stephen Sondheim? Awesome—you missed all of the technical glitches. But you can enjoy it on YouTube here. My favorite part: Neil Patrick Harris singing The Witch's Rap from Into The Woods (at minute 12, if you want to fast forward). His eyebrows deserve a Tony.

CVS Carepass. Months ago, when I was shopping at CVS, a cashier I like to chat with suggested that I sign up for Carepass. For $5 a month, I'd get free shipping on stuff, a monthly $10 promo and other benefits. I signed up and forgot all about it until we were quarantined and I was desperate to avoid going out. Our neighborhood shopping group and bulk orders have been a blessing, but so has this—we order snacks, coffee, cleaning stuff and that vital food group, chocolate, and it usually arrives in a couple of days. (My poison is Cadbury Fruit and Nut bars, if you must know—childhood comfort food.)

This food calculator
can help reassure you that, yes, you have stocked up on enough beans or tuna or pasta or whatever for your family. Oddly, it does not list chocolate—but ice-cream is on there.

Frederic Chopin. He's my favorite classical music composer, and he's been on Alexa a lot to help keep us chill. Last week the New Jersey Symphony Orchestra shared this video of violinist Wendy Chen playing Nocturne in C-Sharp Minor, accompanied by a friend in Shanghai who's a piano professor. It's beautiful.

Disinfecting tablets. I am SO over wiping groceries down with disinfecting wipes. Our neighbor/patron saint, Matt, suggested Glissen Chemical Nu-Foam disinfecting tablets. Note, this product is NOT on the official EPA list of disinfectants for use against coronavirus. But it is EPA-regulated and otherwise proven as a disinfectant. So we've been using it. You dissolve one tablet in 1.5 gallons of water, pour into a spray bottle like this and spritz away.

DaveDash. Dave and I take turns hanging with the kids and doing our jobs. When I'm up in the attic, working, Dave will call and ask what I want for lunch. And then he'll trudge up the stairs and deliver.  Sometimes, he surprises me, like when he made me an awesome tuna melt. (There is a definite theme to my eating these days and it is: comfort food). He does the same for Sabrina. And that, my friends, is my sweet husband, aka DaveDash. I'm grateful for him, always, but especially now.

Tuesday, April 28, 2020

The bittersweet joy of celebrating a child's birthday during quarantine

This guest post is by Susan Cohen, an awesome woman I met through the blog. She is mom to two super-cute boys; her oldest, Elliot, has tuberous sclerosis complex that has lead to developmental delays. Here, she muses about celebrating his birthday during quarantine, and all the sweetness and bittersweetness that brings.

As I sit here on the eve of my son's 8th birthday When you have a son like Elliot, an easy going, happy, unique boy you wonder about the most appropriate way to celebrate him. For every birthday that we approach there is always a feeling of pride and melancholy. Another year of the laughter and hugs of our sweet boy. Another year where the divide between he and his peers gets greater, the chasm now approaching that of Grand-Canyon-sized proportions.

Elliot does not communicate using words, instead he requires a caregiver to meet all of his needs. He is sometimes able to convey the most basic of wants, such as "more goldfish," either using his talker or by taking a caregiver to the table, where we must surmise his requests. Elliot has been working on a toileting protocol since December of 2018. He has made tremendous progress but there is something incredibly humbling about continuing to order diapers for your 8-year-old child.

This particular birthday is distinguishable due to the Covid-19 pandemic and the social distancing mandates. In a way, special needs parents are the best equipped to deal with this social distancing/self isolation. We have gone through the grief that has been popularized in recent weeks: grief over a loss of control and predictability. Special needs parents are experts in this. From the time our children are diagnosed with [insert rare genetic condition and or pervasive developmental delay] we are adapting. Adapting our expectations, our families and friends, our locations, our hobbies, our own wants and needs. We are fighting for therapies, schooling and acceptance.

Eventually we realize that we just instead have to accept our own version of normalcy, even if it looks vastly different from what we envisioned. Sometime in the beginning of our special needs journey people pass us "Welcome to Holland," as if it is the gospel of but life is  more like "Welcome to Fallujah," as assaults come in every form, from every direction and while the color of the blue sky against the vast desert may be pretty, it is exhaustingly difficult.

As we approach eight years old, Elliot is getting bigger but his needs don't really change. It is significantly more difficult to manage a 65=pound boy than a toddler, though those are the needs we attending to. His medical needs persist; we never know when the seizures may strike. Fallujah indeed.

While us special needs parents may be the most prepared for this type of disruption in routine, we are also the most susceptible to difficulties because of it. So here we are in self-isolation for over one month now. We've got green grass and blue sky and a trampoline and I am unendingly grateful for that. However, we have been separated from the entirety of our support system. A system that includes people who come to our home do behavioral therapy with Elliot. His teachers who work with him every day at school. A cadre of speech therapists, physical therapists, occupational therapists and vision therapists. People who come assist Elliot in the community to learn a bit more independence and people who help in our home to assist Elliot with the activities of daily living such as eating and bathing. This entire network has been ripped away and replaced by teletherapy. Zoom sessions and assignments from school which sound great in theory but are exceptionally difficult to execute given Elliot's distinct profile.

He sits, he knocks the table, he gets up, he bangs the wall. He bangs the floor, he takes his shirt off, he pulls the handle on the See n’ Say spin farm as if he has wandered the beautiful desert in Fallujah for eight years and it is giving him water. This all happens in a span of about thirty seconds. On repeat. All day, every day.

There will be no birthday drive-by for Elliot, no friends sending cards and no zoom birthday celebrations. He would not sit for it anyway, but it is sad, as it is every year, that the network he has only consists of the one we have built to support him, and us as we care for him.

We will celebrate Elliot together at home. We will make a cake even though Elliot does not eat cake. We make the cake for Pacey, so that he knows that Elliot's birthday is every bit as important and cake deserving (the pinnacle of celebration in the eyes of any typical four-year=old) as anyone else's. We will get snacks and do an epic "crunch buffet" for Elliot that will include his favorites like goldfish, pretzels, and animal crackers.

I'm guessing Elliot will be pretty nonchalant about the whole thing. He's pretty cool that way: I worry about all of the things, and he just enjoys all of the things. And when I've had a blessedly full night of sleep and he pulls me in for a kiss and hug I know all is right in our world, even though I wonder how we will continue to function this way for months to come. And I realize that like at all other times during this special needs parenting journey it will be messy, but we will be okay. We will all be okay. So I will take one deep breath before blowing out those candles and saying "Happy Birthday" to my firstborn, the one who prepares me for all the important moments in this life.

Monday, April 27, 2020

Conversations on perma-replay at our house send patience and steak

Max is prone to repeating himself. Over the years, his phrases of choice have ranged from "I love spaghetti!" to "Is Daddy home yet?" to "I want to be a fireman!" to "I'm moving to Los Angeles!" It's his way of processing information and engaging with people and making sure we don't ever ever ever forget. Perseveration, it's called. As you can imagine, this has been A Thing during quarantine. These days, Max is very focused on anything Los-Angeles related and food because after all, he is a growing teen boy. And I am his homebound mom doing my best to make sure he feels heard but OMG. Here's how conversations have been going—and going, and going, and....

Max: "I am moving to Los Angeles!"
Me: "I hope you can move there someday, for sure."
Max: "You can come too!"
Me: "I like it here. I like fall and winter."
Max: "Ewwwwwww."

Max: "It's going to be 90 degrees in Los Angeles on Wednesday!"
Me: "That's awesome!"
Max: "Why do we live in New Jersey? It's disgusting here!"

Max: "I'm getting a big house in Los Angeles!"
Me: "Great! I'll be sure to visit."

Max: "Do you like the steak in Los Angeles?"
Me: "Yes, I did like it when we went out for steak!"
Max: "It's very good!"
Me: "Yes it is!"

Me: "Max, I made you mac 'n cheese for lunch!"
Max: "The mac 'n cheese in Los Angeles is very good!"
Me: "Yes, it is! I liked your favorite place, Joe's Cafe."
Max: "It's VERY good!"

Alexa: "Here's the weather in Los Angeles, California, for the next seven days—Monday, 82 degrees Fahrenheit and lots of sun; Tuesday, 89 degrees and lots of sun; Wednesday, 84 degrees and partly sunny weather; Thursday, 84 degrees and partly sunny weather; Friday, 81 degrees and mostly sunny weather; Saturday, 78 degrees and lots of sun; Sunday, 84 degrees and lots of sun.

Max: "What's for dinner tonight?"
Me: "I'm not sure yet."
Max: "Steak!"

Max: "I like burgers!"
Me: "I do, too."
Max: "Burgers in Los Angeles are very good!"
Me: "Yes they are! But they're good in New Jersey too, I think. Burgers pretty much taste good in any state."
Max: "They're better in Los Angeles!"

Max: "Daddy and me are going to Los Angeles next year!"
Me: "Yes, I truly hope you can visit there again, soon. Right now, people aren't going away on vacation because of the coronavirus."
Max: "I know. Next year!"

Max: "When I go to Los Angeles, I will visit Engine 28."
Me: "I know, that's your favorite station."
Max: "Yes! They're nice."
Me: "They were really nice guys."
Max: "Do they like steak?"
Me: "Probably!"
Max: "The steak in Los Angeles is very good!"

Me: "Max, did you like the tuna casserole I made?"
Max: "It's not steak."

Friday, April 24, 2020

The Disability Blogger Weekend Link-up: quarantine reads

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: Students with special needs make face shields with 3D printers

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.

Note: Your post will be removed if it is for commercial purposes or does not pertain to disability.

Wednesday, April 22, 2020

This is us (quarantine edition)

Yesterday evening, Max and I took a walk outside, the first time we ventured to another block in six weeks. Even though nothing had changed, everything felt changed.

"Mask!" Max said before we left. He knew that it's a way to stay safe; our mayor has recommended masks for anyone walking around or going for a run. 

Arm in arm—there is a lot of uneven pavement and I try to make sure Max doesn't trip—we strolled.
Our neighborhood was weirdly quiet; not one car passed us by in the twenty minutes we were out. We saw a couple of people we didn't know headed toward us, and we crossed the street to stay far away. A jogger without a face mask crossed our paths, and I wondered if he was too close. Being fearful of human interaction: so new and strange.

Max was thrilled to be outside. "Leaves!" he said, happily, pointing to the trees. He can't stand winter and genuinely appreciated the signs of spring. We oohed and ahhed over the daffodils. We talked about there being more chipmunks than usual, or maybe we'd just never noticed them before. We walked by a house with a koi pond; the owner has a yellow VW bus he keeps out (he converted the garage to a tiki bar) but it was nowhere in sight, and I wondered where he and his girls had fled to.

My friend Kristen and her family were also out for a walk. I don't think I've ever been happier to say hello to neighbors, and it made made realize just how much I've missed talking with people in person. As much as I loved our neighbor Zoom cocktails last Friday night, nothing can replace real, live connections. I hadn't realized, either, how much I needed scenery beyond our backyard.

So, it felt good to be out with Max. And it felt unsettling, like we were in a scene in a horror movie with no ending. The movie in which a pandemic strikes the planet, sickens millions, kills more than 180,000 people and seems uncontainable.

I took some deep breaths and savored Max's happiness.

When we got back to the house, I asked if he wanted to hang out on the porch bench.

"No, it's cold!" he said.

And we went back inside.

Tuesday, April 21, 2020

Whatever keeps your child happy during the quarantine is just plain awesome

Last Memorial Day, which feels like a hundred years ago, Max decided that he liked holding an American flag out the window as I drove around. I was fine with that—if it made him happy and it was patriotic to boot, why not?

A couple of weeks ago, Max asked for a flag. I wasn't sure what his plans were but as it turned out, he wanted to hold it and stroll up and down our driveway. Ever since, he's been doing that on days when the weather is nice for an hour or even two.

"It's spring!" he joyfully tells me when he heads outside. He also likes hanging in our backyard with the flag while Dave pushes Ben on the swing.

As unusual as Max's activity may be, I'm glad he's figured out something that he enjoys. He's not a boy who reads books, plays video games or does group chats with friends, and it hasn't been easy finding ways to occupy him.*


At first, I wondered if I needed to figure out something more fun or interesting for him to do. Then I thought: Organizing stuff around the house gives me good feels—when the world feels out of control, putting things in their place brings me peace. Who am I to decide what works for Max? I'll bet that the motion of waving the flag and the repetition is soothing and enteratining to Max.

Bonus points for getting his arm up in the air—look at that supination (aka upward-facing forearm)!—said like the parent of a child with cerebral palsy.

Also, not to be a downer but: Probably no Memorial Day Parade or Fourth of July Parade this year, so he might as well get his flag-waving thrills now.


Also: I get major mom points for stocking up on flags last summer at the dollar store. Max broke his often or Ben would want one and break them, so I hoarded a bunch. Hoarding comes in really handy during pandemics.

Max has spring break this week. We were going to go to Mexico. Instead, you'll find him on our driveway or in our backyard, happily waving a flag.

Let your flag fly, people. Let it fly.

Monday, April 20, 2020

Students with special needs make face shields with 3D printers: GOOD news

Last month, a guy in our area started a 3D Printers Alliance on Facebook for people interested in making 3D masks and shields for workers in need of personal protective equipment. I don't know much about 3D printing and posts like "Does anyone use 3.0mm pla?" are lost on me. But I need hope and good news, and I have been awed by what the group has accomplished: They have made and donated more than 5000 masks to hospitals, ambulance corps, nursing homes, local doctors and nurses, dental practices and even a soup kitchen.

Last night, I read an article on that gave my spirits one of the biggest lifts in recent weeks: special needs students in a school district in Bergen, NJ,  have been using 3D printers to make shields for health care workers, as a supplement to their virtual learning. The STEM coordinator for the district delivered the printers to some dozen families and provided instruction on how to use them; more printers have since been donated.

This is yet more proof of the many abilities that people with disabilities have. They are as capable as any of us of pitching in during the pandemic. Amelia McGowan, a 13-year-old with autism who lives in Rutherford, NJ (that's her at work in the photo above) oversees the 3D printer in her home—it runs a good nine hours a day. Her mom, Stephanie McGowan, and I have a mutual friend, and I connected with them on Facebook.

"When this started, Amelia was so scared," says Stephanie, an advocate and the dean of the School of Education at Felician University. "Her anxiety was through the roof and she couldn't sleep at night. Making these shields helps her to focus on doing something to help others. She says that every time she gets one done, she feels like the world is getting a little better.To see her so fiercely independent and committed to this is simply amazing. My husband and I are so proud! She just got an email from her superintendent and principal congratulating her."

Amelia is taking a lot of pride in making the face shields, too. "I like making them because we are helping people to stay safe," says Amelia. "Maybe our family or friends will need them and it will make them feel good because I made it with love."

Friday, April 17, 2020

The Disability Blogger Weekend Link-up: virtual reality

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 great way to entertain kids and teens and do good

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.

Note: Your post will be removed if it is for commercial purposes or does not pertain to disability.

Thursday, April 16, 2020

The boy who's keeping us all on track

"7:00!" Max tells me and Dave. We have just asked him if he'd like to take a walk with us. Except, he's reminding us, at 7:00 he has a call with his camp director and friends. Oh, right. 

This happens constantly—Dave and I lose track of the time and the day (I've taken to saying that every day is MondayTuesdayWednesdayThursdayFridaySaturdaySunday) and Max is there to remind us that he has a therapy session or a virtual meetup, or that he needs to get his homework done. One time, he reminded us that he hadn't showered the day before. 

Max is really coming into his own during the quarantine. He's guiding/bossing Ben around more than usual and making sure he doesn't get into trouble or hurt himself. (Ben retaliates by flushing the toilet when Max is in the shower). He's offered to help with laundry, a first, then asked me to tell his teacher about it as he wants all the props. He is the only person in our house who shows appreciation for my cooking—he actually gave me a hug last week for a lasagna I made. 

While we haven't gotten into how many people are getting the coronavirus and the tragic number of deaths, we have talked with Max about the sickness that's happening all over our country and the world and how we are staying safe at home. He asks how his teacher and classmates are doing when in their virtual classroom. When we go out for walks, he asks about wearing a mask; we walk on a golf course with nobody else in sight so it's not necessary, but I got fabric ones to put on once we start going out to stores again.

Max is well aware that there's a crisis, and he's doing his part at home. It's yet more proof of the many level of smarts that people can have.

This morning, there were crumbs all over the kitchen floor. Max picked up the Dustbuster, quite the fine-motor-skills feat, and handed it to me.

"I'm strong!" he said.

"Yes, you are!" I said, and I meant it.

Wednesday, April 15, 2020

Stuff that's keeping our family sane this week

Basement sleepovers. Dave started sleeping in the basement with the boys on Saturday night a few weeks ago, so they could "get away." I wanted to join in but, no girls allowed! They hang in their man cave and watch movies. Dave and Max crash on the couch, Ben has a little cot. Sabrina holes up in her room (#teen). I get the first floor to myself and Zoom with friends or watch TV or just enjoy some rare alone time.

A jumbo roll of Kraft paper. You can roll a giant piece out along a floor and use it for anything from drawing a maze to making a town or a zoo complete with pictures of buildings and play people and animals. We got a roll of brown Kraft paper (this) but you can also get one in white (this). 

Virtual music therapy on Facebook messenger. Zoom has been working fine but Max's music session goes for an hour, and Zoom ends at 40 minutes. Our awesome music therapist, Amanda, suggested this. Just go to Facebook messenger, find the person and in the nav bar click the movie camera—or they can do for you. Easy peasy.

Flarp. It's a slime-like substance that can make fart sounds if manipulated the right, but is overall great for sensory play or any play (it's just annoying to get off clothes, so a bib is great). All my children love it. You can find occasionally find it at the Dollar Store but for now, it's on Amazon here.

The hostas blooming in our front yard. I don't think I've ever been so happy to see them—totally appreciating any new sign of life right now.

Going in on bulk order grocery delivery with neighbors. So far, we've done this with Baldor Food and The Wild Salmon Co

The Cincinatti Zoo livestream. It's on Facebook daily at 3 EST here, and you can go back and watch older ones). If you do nothing else, watch this video of Rico the porcupine eating peanut butter.  For more zoos and aquariums doing livestreams, click on this page of the Association of Zoos & Aquariums and scroll down for a list. 

Blueapple Produce Savers. The last thing I want to do right now is waste produce that's already hard to get my hands on. Blueapple freshness balls—you just slip a packet inside—are supposed to keep fruit and veggies fresher longer by absorbing ethylene gas in the fridge. A year's supply was $20 so we figured, worth a shot.  

I told my family exactly what I need for peace of mind.
 And that is: neatness and as much cleanliness as possible in our home. It gives me the delusion that the world is under control when it is not. And, get this, everyone is actually putting stuff away without nagging. And Max has taken to pointing out when Dave leaves crumbs all over the floor. My hero. 

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