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. 

Tuesday, April 14, 2020

A great way to entertain kids and teens and do good

All around me, people in my town are doing their part to help with the pandemic. There's a local Facebook group with hundreds of people sewing masks. There's a 3D Printing Alliance full of people trading tips on printing masks which they then bring to hospitals. There's my neighbor, Kristen, an EMT who works on a volunteer First Aid Squad and who's been getting the word out about safely removing gloves

I run a Girl Scout troop, and I've been wondering what we could do.  My friend Hedy told me that her daughter and friends had been making cards for the residents of the nursing home her husband run, which sounded great. Last weekend, I called our local senior living home and spoke with the social director. Yes, the residents would be glad to receive some inspirational cards. They were doing OK but were isolated in their rooms, with only the occasional small gathering, and could use some cheer.

Sunday evening, our troop jumped on a Zoom call. For more than an hour, the girls made cards and chatted. Ben joined in, too. "I want you to write 'I love you, Mom!" he said, not totally getting what we were doing. So I wrote that, he drew a rainbow and I wrote a note to the resident explaining that he was a little brother of a Girl Scout. 

The next day, I addressed our letters to the social director and left them in our mailbox for our carrier. The social director wrote me a week later to say the cards were a hit, and that some residents had hung them in their rooms. Next Sunday, we're writing notes to residents of a local home for adults with disabilities. (I found out yesterday, after I posted about coronavirus spreading in group homes, that residents of a local group home were doing OK). I asked Max if he wants to join in, and he is going to.

Total win-win.

Monday, April 13, 2020

Disabled adults in group homes are at high risk for coronavirus: Alert! Alert!

This weekend, I read a deeply troubling article in The New York Times about disabled adults in group homes in New York, one of the states hit hardest by the pandemic. In one home in Bayville, 37 of 46 residents had tested positive for the coronavirus; two have died, and nine are still hospitalized. (And yes, I wondered about the photo in the article that shows several residents who likely do not give permission.)

As the parent of a teen with disability, one who may someday in a group home, I felt particularly horrified. (The photo above is a group home in our area that I parked outside of a couple of years ago, wondering if my boy might someday live there.) In our state, NJ, last week it was reported that twelve people with developmental disabilities who live in group homes and state-monitored facilities had died from Covid-19, and 87 more had tested positive.

All in all, reporter Danny Hakim noted, developmentally disabled people monitored in New York state were dying at a rate far higher than the general population. One study done by a consortium of private care providers indicated that residents of group homes and similar facilities in New York City were more than five times as likely as the general population to get the coronavirus. Five. Times. And ten percent of the homes' residents had coronavirus-ish symptoms but hadn't yet been tested.

Hakim reported that the state continued to send adults who were vulnerable to day programs even after bars and restaurants had been shuttered. The article also noted the challenges keeping people with intellectual disability isolated. "One of the individuals here is positive, and his behavior is to get up, to pace, and he wants to give me a hug, shake my hand," said one of the caregivers. "They have a hard time realizing that they need to be isolated, and the psychologists aren't coming out and talking to him."

Meanwhile, there's insufficient protective equipment for staffers at group homes and oxygen for residents in need. And there continues to be great concern about residents receiving adequate hospital care. Last week, I spoke with a longtime disability expert and advocate about the outrage of medical care rationing for people with disability. This week, Disability Rights New York filed a federal complaint claiming that New York's Ventilator Allocation Guidelines for a severe flu pandemic discriminate against people with preexisting conditions.

As a society, it is our responsibility to care for our most vulnerable. There's awareness out there that the elderly are at higher risk for coronavirus, and the domino deaths that have occurred in nursing homes. But who's thinking about the other vulnerable people in our population—severely disabled adults living in group homes? The ones who may not have the ability to speak up for themselves or, in the case of older residents, family to do it for them.

What can we, as a community, do? Speak up. Today, I wrote a message on a local Facebook board asking how our local group homes was doing and linking to The New York Times article. I also write our state representative, asking to make sure that people check in with local group homes to find out what their needs may be. You can find the contact info of your rep here—it takes just a couple of minutes to send a note. If you have other actionable ideas, please share.

Friday, April 10, 2020

The Disability Blogger Weekend Link-up: #AloneTogether

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 that's keeping me sane this week

Where it says "Your URL" put the direct link to the post.

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

Thursday, April 9, 2020

That time I forgot Passover and a mini miracle

Technically, I didn't forget all of Passover. I cleaned the house. Ordered food from a local caterer (win-win—I wasn't up for cooking and I supported a local business). Set the table last night for our seder, the traditional Passover meal. And then I realized: I had basically forgotten to plan for the seder plate, the centerpiece of the whole dinner. I've never done that in my entire life. But this year, everything is upside down and out of order and just plain surreal.

The seder plate is a collection of six foods that symbolize the story of Passover, this is what a traditional one looks like.

There's a green vegetable (karpas) that commemorates how the Jewish people flourished during their first years in Egypt and spring, when Passover is celebrated. It's dipped into salt water for the tears shed during slavery.

There's a sweet paste made of apple, nuts and spices (haroset) that recalls the mortar used to construct buildings for Pharaoh.

There's a bitter herb (maror), usually horseradish, for the bitterness of slavery.

There's a second bitter herb (hazeret), often Romaine lettuce.

There's a roasted lamb shank bone (zeroa), for the sacrificial lamb during biblical times.

And there's a hardboiled egg (beitzah) for the holiday sacrifice that also symbolizes the the cycle of life, and how even in the hardest times, there is hope for a new beginning—and how apropos is that right now?

Weeks ago when I put in the order for our meal, I had the presence of mind to get a shankbone. After that, kaploeey went my brain. Now, I had to figure something out, stat.

Hardboiled egg, not a problem. I mushed apples and nuts together for haroset. Bitter herbs...hmm...well, we did have this tube of ginger paste and I personally can't stand the stuff so that would work for a bitter-rific substance. Second bitter herb: scallion shoots left over from a rice dish for the win. But I got stuck on the karpas, the green vegetable. We didn't have any.

I stood in the kitchen as the sun poured in, considering putting out a call to neighbors. My eyes fell on our windowsill and the little plant Ben's teacher had handed me when I picked him up from preschool on the day it shut down—parsley the kids were growing for the seder plate. Ohhhhh! But I hadn't remembered to remind him to water it often. I took a look. It was still hanging in there, and it seemed like there would be enough for the second seder, too.

Chanukah is the holiday when the oil that was supposed to keep the temple candelabra burning for one night lasted for eight, but here was my Passover miracle: a baby parsley plant that would last for two seders. Well, that and the fact that there was no drama at the seder, other than Ben's meltdown when I served Max soup first instead of him. We sat outside on our deck, read the story of Passover, dipped sprigs of parsley (Ben, proudly: "I MADE THAT!!!")  in salt water, enjoyed the beef brisket and roasted vegetables and potato kugel (carb heaven, look it up), sang songs and celebrated the holiday in a spring when we so needed the comfort and familiarity of tradition.

Tuesday, April 7, 2020

Stuff that's keeping me sane this week

A short list of things that are keeping me sane this week.

Paper hand towels. A box of these landed on my front porch this week and it was like Christmas-Chanukah in April. Our neighbor Matt, aka our coronavirus patron saint, bulk-ordered them. They're the kind you usually see in public restrooms, and they are THE best thing for these times—so much more sanitary than fabric hand towels. And you don't need to waste your precious paper towels. Bonus for us: Max has trouble ripping paper towels off a roll but can grab one of these.  There are the standard white kinds or brown ones made of recycled paper that are a great deal. If you want to google around they are often called "C-fold towels."

Have I sufficiently bored you?

Cosmic Kids Yoga on YouTubeThis woman is actually not-annoying for a kid show host, she makes yoga fun and there are a whole lot of videos to choose from.

I made this one-pan cheesy chicken, broccoli and rice for dinner and everyone gobbled it up so I'll be making it again this week. Last night I made Jamaican rice and beans and a fistfight nearly broke out because SOME people said rice and beans are only a side dish and I was all, "THIS IS A MEAL, PEOPLE, COMPLETE WITH PROTEIN!!!" I even put some chicken sausage on top but I still lost that battle, so I'm boycotting cooking. At least until lunchtime today.

I put myself on news rationing and I am only reading/listening to the news once in the morning and once at night and not leaving it on or clinking on links all day long, which was basically causing blood pressure spikes.

Marble maze runs. They keep Ben and Max mesmerized for respectable chunks of time. This one's a classic. I just ordered this National Geographic version with marbles that glow in the dark.

This $7 rosewater facial spray smells great and gives me a lift when I'm at my desk doing work or post-child-meltdown.

Using my rainy-day stuff. I am a bit of a hoarder, the type to buy a package of new socks or kitchen utensils then sock them away for someday. But pandemics make you realize that there's no time like the present and you should see my feet!

Laurie Berkner's livestreams on Monday and Wednesday mornings on her band's Facebook page. We met her in person last year, and her music makes all of us happy.

Friday night Zoom hangouts with friends. While you guys are chatting, change your background and surprise them—just click the arrow next to "start/stop video," click "choose virtual background" and you can upload a pic. Tip: If you, too, choose a hunky model, make sure you change your background before you hop on a Zoom work call.

Monday, April 6, 2020

My children had a bazillion hours of screen time this weekend and....

The other weekend, my children beat their own personal worst for screen time. This weekend beat last weekend. Right now, I am OK with this. I am in full-on parent survival mode.

Special needs moms are especially at risk for one thing right now: guilt. Our children aren't getting their usual schooling, and it's tricky keeping up with the virtual demands as we juggle our work and other kids. Our children aren't getting their usual therapies, and filling in those gaps with exercises probably isn't happening. Our children may not getting a ton of our attention. What many of our children are getting is screen time.

Guilt, guilt, guilt. It runs in our veins, and right now, it can feel overwhelming. Oh, heck, ALL the feelings are overwhelming right now.

Have you googled how much screen time is too much? Sure did. The American Academy of Pediatrics (AAP) used to recommend none for tots and under an hour for kids ages 2 to 5—but those were widely considered too restrictive—plus consistent limits for kids older than six. As of several years ago, the AAP loosened up their guidelines (noted here). The best you can do is set some parameters (next weekend, I'm going to institute screen-free afternoons—or at least try), have screen-free times like at meals and bedtime, try to spend a little time exploring the digital world together and not beat yourself up on those days when it's screen time, all the time. This isn't going to last forever. I am no expert but it seems like a good month or two of excessive screen time isn't going to screw up our children's brains.

Max likes to watch fire truck videos and videos of L.A and practice schoolwork on IXL. Ben is into PJ Masks, occasionally playing educational games and watching TikTok dance videos and/or making them with his big sis. Sabrina FaceTimes constantly. Without screen time, there is literally no other way for Dave and I to do our paid work, the housework, cook, clean, care for our children, disinfect the house and groceries, figure out how to keep getting groceries and do All The Things.

At times, we need a break, too—something that's easy to neglect because of all that we're juggling but really, really important, given all the stress and sadness. My break usually consists of sitting in the backyard, on Ben's swing. It works.

This pandemic will go down in history as one of a handful that had a major impact on civilization. That's one seriously valid excuse for whatever you're not doing with your child or feel like you're not doing with your child.

As always, you are doing the best you can.


Please don't go guilting yourself.

Friday, April 3, 2020

The Disability Blogger Weekend Link-up: At least six feet away!

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: Everybody hurts: The grief we're all feeling now

Where it says "Your URL" put the direct link to the post.

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

Thursday, April 2, 2020

Everybody hurts: The grief we're all feeling now

Last night, I was down in our basement organizing, which is what I often do for fun these days. One thing I've been meaning to do for weeks now is unpack the big duffel bag with a pillow, blanket and toiletries: Max was supposed to do a school sleepover, but it prudently got cancelled just before his school shut down. As I took the items out of the bag, a wave of sadness washed over me. Max has always loved these sleepovers, which happen just once a year. And he had to miss it.

These moments of sadness hit me all the time, including seismic ones when when I hear the death toll in our country reported on the nightly news and know that it's growing to soar, when I read about the death of yet another grandparent in my Facebook circle (it started happening last week, and has become a terrible trend), when I find out that a friend has gotten the virus and is suffering. But the loss of our everyday life and experiences also gets to me, and at first, I felt guilty about that.

I mean, our family and loved ones are doing OK. We are holed up with enough supplies, we have neighbors who help each other out, we have a backyard where we can hang, we are not yet stir crazy (well, mostly), virtual learning is going well, Max is doing Zoom speech therapy and music therapy. How can I get upset about missing out on stuff when people are dying in droves? How can I get upset when so many people are stuck inside and struggling—with a lack of work, cancer, abusive partners, their psychological and emotional well-being. How can I possibly feel bad that we didn't get to do spring break in Mexico? That my daughter's lacrosse season will not happen? That our little guy is missing out on playdates?

I've had to remind myself, as I well know from raising a child with disabilities, that the heartache I feel does not need to be relative. Your reality is your own, and you have every right to be sad about the small stuff—or grieve it. As grief expert David Kessler put it in this Harvard Business article, "....we realize things will be different. Just as going to the airport is forever different from how it was before 9/11, things will change and this is the point at which they changed."

I call my mom, who's home alone in her apartment; Facetime my sister; Zoom with other family and friends; do virtual meetings with my colleagues from our attic; wave at neighbors as I keep my distance from the other side of the street; and I grieve the lost of human connection.

I come upon the flyer on my desk at home reminding me about the girl scout camping event; the stickers the piano teacher usually gives Ben sitting on the piano rack, unused; the bathing suit he has been wearing to swim class, where he was just getting comfortable in the water; the email about the birthday party that got cancelled; and I grieve the loss of a chunk of their childhood.

I think about my friend's children who are missing out on their senior year of high school, their graduations, their bar and bat mitzvahs, their first year of college and their semesters abroad, and I grieve for the loss of those irreplaceable experiences.

I read the notes in my town's Facebook group from local businesses asking people to order from them or buy gift cards to support them, and I grieve for their struggles and how our community will change because of the businesses that will not survive this pandemic.

I look at the library books I got right before it closed, the grocery bags sitting on my front porch where the delivery person left them and our car sitting idly in the driveway and I grieve the loss of the freedom of going out and doing stuff.

I watch the kids communicating with their teachers on a screen and I see the train zooming by down the road, likely empty, the one I usually take to and from work and I think about all the complaining we'd do about the train's erratic schedule and how I ache to be that train, going to my office. And I grieve the loss of our routines.

I look at the stretch of forsythia bushes blooming on our street, and think about how glad I usually am to see them. And I am glad—their yellowness is sunshine for my soul, as are the daffodils in the backyard. But I also think that the last time I saw them coming in, I could never have imagined what would happen to this world, and I grieve the lost of our innocence.

I see the #AloneTogether ads on TV, with music that sounds a little sinister to me, and I know full well that staying home is what every one of us needs to do right now, and yet, I grieve the loss of life as we know it.

And so, I grieve. You grieve. Together, we grieve about everything happening to people around the country, to the ones we love and to us. We grieve because our normal is gone and we don't know when it will return or what form our new normal will be.

I don't sit around feeling sad all day—who has the time?! I find joy in hugging my children and when Ben and I say "Love makes you warm!" like we always do. I take comfort in Dave, sweet Dave, and in the familiarity of routines, like making our beds in the morning (there's an actual study that found you'll be more productive all day long) and reading to Ben at bedtime. I get satisfaction from my work and my writing. I take pleasure in family fun, like a basement sleepover or a weeknight BBQ. In the evening, once the kids are asleep, I try to relax and watch something on Netflix, although inevitably I end up on CNN.

Last night, a man was on who had lost his husband to Covid-19, an emergency room doctor who worked not far from where I live. This poor guy cried so hard he could barely speak. I sat on our couch, grieving with him. Surely the whole country did. 

Then I shuffled off to arrange my children's schoolwork for the next day and print worksheets. My eyes fell on their backpacks, lying empty in a basket. And I grieved some more.

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