Friday, May 29, 2020

The Disability Blogger Weekend Link-up is here

What to do if you're new  

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

Like this: PPE for children and teens with disabilities

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, 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

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, 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).

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

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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.

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