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. I chose this dude. 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.

Tuesday, March 31, 2020

In which Max practices social distancing at home, and it's awesome

For a couple of years now, I've had one teen who rarely likes to come out of her bedroom, and one teen who rarely likes to be in his. Both have left me pondering whether the behavior is OK. It's just not healthy to hole up in a room for any length of time, emerging only for bathroom and meal breaks. But I also wondered why Max never wanted to be alone. It's true, he doesn't read books or text and talk with friends on the phone. Still, Dave and I have hoped that he would grow more independent.

Well, the coronavirus seems to have had at least one positive affect in our household. Because Max has taken to hanging in his room in the afternoon, where he watches videos about fire trucks or Los Angeles. I'm quite sure he's getting a little sick of all of us—there's a fair amount of drama happening here concerning anything from who once again left their half-empty glass of water on the living room shelf (GERMS!!!) to "I need Oreos!!! Who ate the last Oreo?!"  to "My Lego bridge fell down waaaaaaaaaaaaah!!!"

My game plan is to get Max to practice math and English using IXL, which he's enjoyed before (his school has set up a subscription). I'm also still hoping to get him interested in books online. But in general, I think this social distancing is good. It's a sign of maturity. It's so good to learn to enjoy your own company.

Yes, I may be the rare mom who's glad her teen is hibernating in his room. But yay, progress of all kinds.

Monday, March 30, 2020

Medical care rationing and disability: What parents need to know

As soon as I heard that Italy was at a point where doctors were making decisions about who should live and who should die because of a shortage of ventilators, I started thinking it was just as matter of time. As soon I heard there was a ventilator shortage here, too, I knew that moment of danger had arrived. People with disabilities like my boy Max were at risk not just for contracting the coronavirus but for not being treated for it. Because the minute people have the power to play God, they may deem those with disabilities less worthy of living.

The bias is real—some state's triage plans specifically endanger people with physical and intellectual disabilities. Alabama's plan states that people with "severe or profound mental retardation" (yes, they actually used that term) would be considered "unlikely candidates for ventilator support" should ventilators get rationed. Kansas's Department of Health and Environment issued a protocol to health professionals stating that it would be OK to remove ventilators from patients with "advanced untreatable neuromuscular disease." And Washington State's plan prioritizes people with a better "baseline functional status" and also recommends that teams consider transferring patients with "loss of reserves in energy, physical ability, cognition and general health" to outpatient or palliative care. In that scenario, people with disabilities start at a disadvantage.

On Saturday, the director of the federal health departments' Office for Civil Rights (OCR) office announced that his office was opening several civil rights investigations to make sure that states did not allow medical providers to discriminate on the basis of disabilities, race or age. "Our civil rights protect the equal dignity of every human life from ruthless utilitarianism," Roger Severino said in a news release. "Persons with disabilities, with limited English skills and older persons should not be at the end of the line for health care during emergencies." (Here's the bulletin the OCR released.)

Having raised a child with disabilities for 17 years now, I am acutely aware of the discrimination that exists—this thinking that our children are less-thans. Last year, I wrote about a complaint received by the Office for Civil Rights involving an individual with disability who was initially denied a heart transplant. (There is a long history of bias in transplants for people with I.D. and autism.) Should our children contract the coronavirus and end up in the NICU or ICU in need of a ventilator when a hospital doesn't have enough to go around, there is a chance that hospital could give that ventilator to another person—or remove a ventilator from a child, teen or adult with severe disabilities and give it to someone else if wrongheaded people are making these decisions.

I wanted to find out what parents and families should know ahead of time, in the event their child or teen ends up in the hospital, and so I turned to Marcie Roth, the executive director and CEO of the World Institute on Disability. I interviewed Marcie back in 2013 about disaster preparation for special needs families when she was the director of the Office of Disability Integration Coordination for FEMA. 

The key thing you can do to safeguard your child

"The first and foremast thing to protect your child is, to use a crude term, stay the fuck home! It's actually a hashtag," says Marcie. "You want to eliminate any and all ways you can think of to avoid your child or someone in your family contracting the coronavirus."

Call a doctor you trust ahead of time

Yes, do this now. Have that worst-case scenario discussion and see what steps the doctor recommends you take—bonus points if they are associated with the local hospital where your child would likely end up should they need care for COVID-19. "That person may be likely to say, 'Oh, don't be silly, they're not going to remove the ventilator.' And you hope they're right, but press on," says Marcie. Perhaps you could get their phone number to call or text, in case of emergency. "If everything started to fall apart, you need someone who can think more clearly than you to handle this," says Marcie. "They may not have the ability to intervene at a hospital, but they may. Your trusted doctor is more likely to intervene than your trusted next door neighbor." If your child regularly uses a ventilator, create a plan now with their doctor about what will happen should the ventilator malfunction, due to the shortage.

And if the worst-case scenario happens....

...and a parent is in a situation in which a child is fighting for their life and the parent needs to fight for their child's right to life, there are resources you can turn to for an intervention. These are the ones Marcie recommends.

• If you believe your child is being being discriminated against or denied medical care because of their disability, file a complaint with the Office of Civil Rights here. You can also email the office at or call 1-800-368-1019.

• Find your local Center for Independent Living (you might want to look this up now). These centers perform a variety of functions, including referrals and information. It's worth a call now to ask if yours would be able to provide assistance in case of an emergency.

• Contact your state's protection and advocacy agency, which provides legal advocacy services for people with disabilities. (Look it up here.)

• Reach out to your state's Developmental Disabilities Council. (Here's a state by state listing.)

• You could also call the Disaster Hotline of the Partnership for Inclusive Disaster Strategies, whose mission is to achieve equal access to emergency programs before, during and after disasters for people with disabilities. The number is 800-626-4959.

• Ask a few friends if they would help advocate for your child should the need arise. Friends will always be there for you, of course, but it's good to make the ask now.

I hope beyond hope that you never need to act on the information above. But as we parents of children with disabilities well know, knowledge really is power.

Friday, March 27, 2020

The Disability Blogger Weekend Link-up: Let's get together

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: The most feel-good thing I've seen all 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, March 26, 2020

The most feel-good thing I've seen all week

Yesterday, someone at work shared this photo snapped by a friend's sister, a nurse in the emergency department at Morristown Medical Center in New Jersey. The man standing at the glass doors of the ER is holding a sign that reads: "Thank you all in Emergency for saving my wife's life. I love you all." The staff there doesn't yet know who the man is.

I sat on our couch last night and just stared at this man and his sign. CNN was on in the background, and as experts spoke about the growing number of people stricken with the coronavirus and growing concern about lack of equipment, it felt so heartening to know that just this one woman had been saved. It felt good to consider the waves of gratitude I've been seeing coming toward healthcare workers. That little bit of good news was major.

I continue to beam good health vibes at all of you.

Photo credit: Allison Swendsen

Wednesday, March 25, 2020

A prayer for you, from Ben

Now that I am Ben's nursery school teacher, along with the kajillion other jobs I have picked up in recent weeks (I'm Chief Disinfector at our house!), I've found out some cool stuff about his day at school. My favorite: His class has a daily prayer, and the kids sign as they say it.

Every morning, at our designated 10:15 a.m. prayer and snack time, we say it together. It is the highlight of my day.

We could all use some prayers, and a reminder to count our blessings, right now. Here's one for you, from Ben. xo

Tuesday, March 24, 2020

The story of our disinfecting wipes spy-angel

If there's any goodness coming out of this whole coronavirus nightmare, it's people looking out for each other. Neighbors post in our local Facebook group asking if anyone needs anything at the grocery store. (Shout out to Matt, who snagged Trader Joe's mac 'n cheese yesterday, a Max staple.) People are donating protective supplies to pediatricians and doctors, crafters are making masks. There are win-win fundraisers happening in our area which people donate to local restaurants and they provide meals for hospital staffers working the front lines of the coronavirus war.

Our family is the lucky beneficiary of some Costco kindness. The story begins with a balance bike of Ben's that I posted on our local Facebook swap group the other week. A bunch of people responded and I went with the first one, a lady in a neighboring town who offered to come pick up the bike the next day. She messaged me that morning to say she couldn't stop by until later because her husband works at Costco and they had asked him to extend his hours.


Ohhhhhh, boy.

We were well aware that stock was running low there; friends who had made the trek had posted photos on Facebook of the bare towel paper and t.p. shelves. In our eagerness to keep Bad Germs from spreading, we've been using paper towels to dry our hands instead of fabric hand towels—they're more sanitary. We knew that the situation was ramping up here and that we wouldn't want to leave the house to get anything for a while.

And so, I decided to get some intelligence and I asked this stranger if she knew what our best shot was at getting paper towels. She immediately responded, and told me to get to the store around 8:15, grab a parking spot where we could see the front door and get in line as soon as one started. "It's crazy there every day," she said, "but you can be the first ones there." Also, she added, "expect people to be running with carts as soon as they get past the checking of memberships."

Whoa. We didn't have time to train for The Costco Olympics. Also, was it worth the risk of going to the store? Maybe, if they had disinfecting wipes. So I asked if the store had those. She said no, then kindly offered to keep us in mind if a truck came in. I thanked her.

And then, this lovely woman showed up to grab the bike and handed over a canister of wipes. She refused to accept any payment. I thanked her profusely. Never in my life would I have thought that a canister of Clorox disinfecrting wipes could bring me to tears.

Last Thursday at 7:09 a.m., she messaged me to say Costco had gotten Clorox wipes. Dave had to get there at 8 a.m. They were only letting fifty people into the store. There was a limit of one package per person. They were by the front register. She shared a photo of where the wipes were, zapped to her by her husband.

Once again, I told her how grateful I was, noting that our exchanges were straight out of a spy movie. Dave dashed out of the house, ended up being the fourteenth person in line, waited more or less patiently, ran-not-walked in when the doors opened and scored a package of wipes. He instantly sent me a photo of them, so excited was he. A five pack! I shared the pic with my Costco spy/angel.

"You developed a great mission and Dad executed it well," she said.

I told her he'd be receiving the Costco Bravery Award when he returned home and that someday, when this had all ended, I'd like to thank her in person. Dave passed the good vibes along and gave a canister of wipes to our babysitter.

Things may be bad out there, but there is also a spirit of kindness, goodness and generosity in the air. I'm taking comfort in that.

Monday, March 23, 2020

A new normal

We took a walk on the local golf course yesterday. It was totally and eerily empty, just us walking over the grass. It felt good to feel the wind on my face and to hear Ben's laughter as he dragged a stick through the sand traps. On the way home, we saw messages of love and hope written in chalk on the sidewalk. That felt really good, too. I'll take whatever hope we can get. We live in New Jersey, and we're on lockdown. 

Life in our new Stephen King existence means that once a day, we get out to take a walk outside or ride a bike on our street. Twice a day, I swipe down everything with disinfectant wipes except the kids. I say things like "Don't use too many paper towels!" I stayed up till midnight last night to snag a grocery delivery spot for a week and half from now (we're not going out to the supermarkets, it's too risky). I need to figure out stuff to make with the five pounds of pearl barley I panic-ordered. 

Dave and I are just doing our best to juggle the care and feeding of the kids, house stuff, our jobs, and schoolwork and to exude a calm and cheer we don't feel. Sabrina and Max are doing virtual learning—their schools got going on that last week which keeps them occupied for part of the day. There's not much happening with Ben's preschool yet, although he has a whole lot of toys and a sister who loves doing TikTok videos. The kids have all been pretty adaptive so far about our new normal, and make good use of their electronic devices. *UNDERSTATEMENT*  

I was worried Max would have issues staying home because he and Dave love going on adventures that mostly involve eating, but he has the maturity to understand there are bad germs out there and this is the way things are, and for that, I am really, really grateful. I am also really grateful for Trader Joe's mac 'n cheese, because we're eating a lot of of that around here. 

Max has always loved iPad anything, and so the Zoom meetings with his teachers and therapists work well for him. He has class from 9 to 11:30 or 12:00 daily, depending on his therapies. Other times, he enjoys making lists, like what he plans on doing in California when he moves there. Here he is on Friday, doing PT with his therapist. 

Homework for Max starts this week. He got a packet from school, and his teacher has been emailing worksheets. Yesterday, I finally organized folders for his school subjects and therapies. Max sits in his new classroom, aka our dining room, and does his thing with help from me or Dave. Sabrina's classroom is her bedroom or our basement. Ben's classroom is the den.

Sabrina made a sign to keep Ben out of her room when she's learning, so Ben made one, too:

For the last few months, when Ben wakes up in the morning he asks if it's a family day or a babysitter day. Now every day is a family day, and he's been pleased with that. He did ask yesterday when he was going back to school, which kind of broke my heart. Ditto for when Max told me that he was looking forward to camp, because I am just not sure that's going to happen this year. 

I am trying not to watch or read the news that often throughout the day. And making Zoom dates with family and friends. And disinfecting and disinfecting some more. And washing my hands and making sure everyone washes theirs. And taking this one day at a time. That's one major thing Max has taught me—trying to peer into the future can be terrifying. Especially right now.

Beaming hugs, good spirits and strength at you.

Friday, March 20, 2020

The Disability Blogger Weekend Link-up is here 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: 15 things nobody ever said before the coronavirus struck

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, March 19, 2020

15 things nobody ever said before the coronavirus struck


"Can the virus stick to an avocado?"

"Is it bad if I don't disinfect the mail?"

"Kids, finish breakfast and go to your rooms for class."

"Do you think the Amazon workers wear gloves when they pack up boxes?"

"Does anyone we know have an N95 mask?"

"Cant' wait for cocktails tonight after work, see you on Zoom!"

"I could open my own sushi restaurant with the 26 pounds of rice in my pantry."

"The line to get into Costco was only a half hour long this morning."

"Honey, did you Lysol the box that just got delivered?"

"Let's take a walk, just stay six feet away from everyone."

"Could we use Starbucks napkins if we run out of t.p.? Maybe we should start hoarding them. Oh, but that would mean one of us has to go to Starbucks."

"Can the virus stick to your shoes?"

"I just organized my pantry for the sixth time this week."

"I am so over singing Happy Birthday."

Wednesday, March 18, 2020

Great stuck-inside family activity: A fill-in-the-blanks family journal

A couple of years ago, I got a family journal as a gift. It's a fill-in-the-blank book with questions like what a typical Saturday morning looks like, our most treasured possessions, games we like to play, favorite places in the house and how to sum up the family in three words. This journal has been sitting on my desk, mocking me with its presence ever since. I mean, what kind of mom doesn't have time to do something as awesome as fill in a book of memories with her family? This mom.

Now that we're all stuck at home, though, we have lots and lots of time and I desperately need ways to fill it. Finally, we're doing the book! I'm sharing about it, and others—plus memory books you can help kids and teens fill out and ones for couples, too. If there's ever been a time to celebrate family and life, this is it.

Journal books to help kids and teens fill out

Tuesday, March 17, 2020

Coronavirus cleaning tips: The right and wrong ways to disinfect a house

I wasn't germphobic until the coronavirus hit and now, germs are all I think about. Which is why I was up at 1:30 a.m. last night, swiping down our kitchen cabinet handles with disinfecting wipes.

I've been reading up on the right (and wrong!) ways to clean and disinfect homes. A new study on the novel coronavirus found that it can stay on surfaces for days, including plastic and steel for 72 hours. Although our family is staying put inside our house for the foreseeable future, Dave and I have ducked out a few times for groceries and last weekend all of us took a walk on a trail, so I'm not taking any chances. Here are some key tips I've picked up. Your best defense of all: Wash your hands for 20 seconds.

Use cleaning products that combat coronavirus

Here is a complete list of cleaning products pre-approved by the U.S. Environmental Protection Agency for use during the coronavirus outbreak, including Clorox, Lysol and Microban. Bleach (4 teaspoons bleach per 1 quart water), rubbing alcohol and hydrogen peroxide (typically sold in concentrations of 3%) also work. White vinegar, tea tree oil and other natural solutions do not work to kill coronavirus. And, surprise, good old soap and water are great if you're game to scrub, as a chemist and member of the American Chemical Society told Consumer Reports: "Scrub like you've got sticky stuff on the surface and you really need to get it off."

Have your coronavirus gloves

If you're not using disposable gloves, dedicate a pair of reusable gloves to disinfecting, clean your hands right after you take them off and stash them in a plastic bag.

Disinfect the right way

When you use disinfecting cleaner or wipes on cabinet pulls, door knobs, door handles (one of the dirtiest surfaces in a house), light switches, faucets, and toilet handles, the surface must remain visibly wet for several minutes, or the prescribed amount of time on the package instructions. For Clorox disinfecting wipes, for instance, that's four minutes. It may take several swipes to make sure the item is fully wet—see this video from Carolyn Forte, director of home appliances and cleaning products for the Good Housekeeping Institute.

Disinfect your devices, too

It's safe to use disinfecting wipes and 70% isopropyl alcohol on your phone screen or keyboard, according to the folks at Apple, The Samsung people say the same. Don't forget the TV remote controls.

Know that paper towels are your friend 

Yes, paper towels are in high demand, but they are far more sanitary to use than towels. If you need to have anyone over at your house, remove the towels and keep paper towels handy. And for sure use them for anyone in your house who is sick. I've seen recommendations to keep a separate towel for each member of your family. With five of us here, I feel like nobody's going to remember to use their dedicated towel so I haven't tried that but yay if it works for you.

Don't walk around the house in shoes

Make everyone leave their shoes at the front door—outside it, if possible. In ordinary times, research has shown that shoes are covered in gross stuff (namely: poop). This is no time to be trekking crap into your house.

Take off your outside clothes at home

A couple of years ago, I read a viral post called "Please don't sit on my bed in your outside clothes" that stuck with me. Because of coronavirus cleanliness paranoia, when I've gotten home from being out these last few weeks I'll change clothes, putting the dirty ones in a plastic bag in the basement. True, coronavirus is less likely to live on fabric—as one expert explains it, the small holes in porous surfaces trap microbes. But see: "coronavirus cleanliness paranoia." Oh, and don't forget to wash the clothes hamper liner.

Image: Flickr/Jim White

Monday, March 16, 2020

Special needs moms, we've got this

I cried when I read that the playgrounds in our town would be closing. I knew it would happen; the rules of our new "social distancing" existence dictate that kids shouldn't be playing together. Still, it was the culmination of a week when life as we knew it fell out from beneath us. My office closed. Sabrina's school closed, then Max's. Local businesses locked up, the library shut down, Broadway went dark. Supermarket shelves were wiped clean. Costco had lines down the block, and it seemed like you were as likely to come to harm from a toilet paper stampede as from the coronavirus.

Max and Sabrina will both be learning virtually. Max's school is using Zoom (classes started this morning) and Sabrina's, Google Meet. (Here's a good article on the rights of your child with disabilities during the coronavirus outbreak.) We may be trying virtual speech therapy and possibly music therapy, though I'm unsure about that. As one speech therapist I know said, "It's totally doable for more situations than you'd think but definitely involves more forethought on both the therapist and family's part." Max only gets physical therapy at school these days so he'll be missing out on that, and we're actually in between OTs right now.

Am I anxious, worried, scared? Of course. Besides the baseline concern of staying healthy and keeping our household running, there are so many unknowns and unique concerns for our children with disabilities. How will they deal with the disruption of routines? How will they learn without a teacher in front of them and their aides? How will they do therapy? How will they handle being apart from peers for so long? How will they continue to thrive and grow? How oh how will we occupy their time?

And yet, when I reach beyond the anxiety, I find something else: the knowledge and security that I have been through the vast unknown before and figured things out. We all have, as parents of kids with disabilities.

At first, when our children were born or first diagnosed...

We grieved.

We despaired.

We worried about the great unknown.

We had no clue how to help a child with disabilities.

We didn't know how to find good doctors, how to speak the lingo, how to deal with the insurance company.

We had to learn it all, except how to love, because we always loved our children like any others.

And now? Look at us. We know what our children need, and how to get them the resources they deserve. We've put great teams in place to support them—doctors, therapists, specialists. We know how to advocate for them. We know how to make things work, even if the insurance company makes things more difficult than they need to be.


We may feel powerless in the threat of the coronavirus, but we will do everything within our powers to keep our families healthy. (If you haven't read much about social distancing, here are two good articles on it: The Dos and Dont's of Social Distancing and Social Distancing: This is Not a Snow Day.)

We know by know, thanks to the connections we've forged through social media, blogs and our local posses, that we have each other. And we will share resources, support, strength, laughs and more laughs. And we will all be right here in cyberspace because, er, where else can we go?! We can set up Facebook time hangouts for our kids. We can try teletherapy sessions if possible and see how those go, or get the therapists to give us specific to-dos to try at home. We can set up new routines, and find new ways to engage our kids. I've been tapping my local mom's group for ideas and info on cool livestreams like 12 famous museums that offer virtual tours and the Metropolitan Museum of Opera's Nightly Met Streams, starting today until the Met reopens.

And for sure we have other kids to juggle and for sure there will be fights and tears and lots more anxiety and we will go stir crazy. Maybe you already ARE going stir crazy or your child is but keep in mind things are just kicking into gear. Your child will settle into a new routine. Your family will, too.


Max had seemed a little dubious about virtual learning—he likes his routines. I was so grateful to his school for getting a plan in place so fast. We set Max up in our dining room, Dave got Max connected to Zoom and suddenly, there was his teacher and classmates right there on his iPad. Max giggled. Ben popped his head into the camera and announced "I don't have school, either!" before we ushered him out.

Sunlight streamed in through the window. I watched Max respond to his teacher's questions, and I felt hopeful.

For more inspo:

Friday, March 13, 2020

The Disability Blogger Weekend Link-up: Take your mind off coronavirus

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: Explaining coronavirus-cancelled activities to kids 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.

Thursday, March 12, 2020

Explaining coronavirus-cancelled activities to children with disabilities

Max was supposed to have a bowling trip and a sleepover at his school this Friday night. He'd been looking forward to it for months. This weekend, I told him that it might not happen, but he didn't want to believe me. Tuesday, it got cancelled. I told him when he got home from school, expecting the worst.

Me: "Max, I'm sorry but there is no bowling trip on Friday."

Max: "Sleeping over?"

Me: "No, you're not sleeping over."

Max [pauses, then responds]: "It's OK. Sick!"

As in, Max did not want to get sick. I was floored that this hadn't been such a big deal. I was proud of how mature he was being.

In the scheme of concerns parents have in these coronavirus times, figuring out how to let a child know an activity has been cancelled may seem like small potatoes. But if you're that parent, it's not. Children and teens with intellectual disability may not understand what is going on. They may have over-the-top reactions involving tears or total meltdowns. Then there's the matter of finding ways to fill the time of cancelled activities.

As hard and meltdown-y as it may be, it can help to give a child a heads up that things may not work out. Max didn't want to think it was true, but even so, I planted a seed. It might help to have a visual aid to explain coronavirus, as necessary—I like NPR's coronavirus comic that you can print out and fold into a zine. It's also good to offer an alternate activity, to soften the blow. I promised Max I will take him bowling when it's safe to go, and challenged him to an air hockey tournament at home this weekend, with a prize being an L.A. t-shirt since he's bent on moving there.

Children and teens with autism can pose different challenges, as a friend with an autistic teen son is experiencing—and she's hoping for some crowdsourced solutions. They live in Boston, which every April celebrates Patriots Day to commemorate the opening battle of the American Revolutionary War. There are reenactments, pancake breakfasts and a parade. Every year, their Best Buddies chapter makes a float and kids ride on it. It's more than likely to get cancelled this year, and she has broached the topic with him. Her son, who talks about the event non-stop all year long, is not having any of it. He'll tell her that it's not raining, there will be a parade.

"But it's not cancelled, there will be a parade," he'll say. And then he'll repeat the same throughout the day, again and again and again.

If you have ideas that help when a child perseverates in this way, please share here.

Wednesday, March 11, 2020

7 ways your child can have more fun practicing speech

This guest post is by Becca Sylvia and Kristi Stearns, two speech pathologists based in Denver and New York City who have recently started the blog Communication Community. Their goal: to demonstrate that communication is for everyone, regardless of age, abilities, or speech or language skills.

How Your Child Can Have More Fun Practicing Speech

It’s true what they say—time does fly when you are having fun. That’s definitely true of speech therapy, as you may have noticed if your child starts fidgeting or getting antsy when working on repetitive articulation drills. Or maybe a session has sped by when they’ve gotten into a game or activity. As speech therapists, our favorite moments are when a session is over and a student asks, “So are we going to do speech today?”

When you and your child are practicing the sounds your speech therapist is working on with them, it’s easy to make it more fun. These are some of our favorite ways.

1. The Speech Restaurant

In this game, your child can “order” speech sounds while playing restaurant or store.  Offer “menu options” that are target speech sounds or words. For example, you can make a menu with the target sound(s). You could also just ask, “Would you like a /sh/ or /s/ today?” You can also change it up and have your be the server or cashier and take your order as you model proper sound production.

2. Scavenger Hunt 

Do a scavenger hunt looking for the target sound(s). Once the target sound is found, encourage the child to say it. This can be pre-planned—you hide cards or objects with the target sound(s) around a room. Or it can more spontaneous, where you search for objects or words with the target sound(s).

3. Let’s Kick It

Pick a favorite activity or sport and have your child work on sounds while playing:
• Playing catch: Take turns tossing the ball back and forth, saying each target sound for each toss
• Soccer: Say the target sound, then kick the ball into net or dribble to a certain spot, stop, say the target sound, then continue dribbling.
• Basketball: Your child can shoot a hoop for each target sound said.

4. Sing-a-long

Make up a song or adapt a song with the target sound—for example, “Old MacDonald had a /g/, gee I gee I oh!” You can also sing “BINGO,” but with target sounds instead of the letters B, I, N, G, O.

5. Hands On

Incorporate something tangible into therapy exercises to grab a child’s attention. You can do coloring pages, providing an assortment of target sound(s) written or drawn on a piece of paper. When they color over that sound, they have to say it. Or you can create a simple puzzle you cut up out of cardboard, and each piece has a target sound written on it. When it’s placed together, they say the corresponding sound. So they say all of the target sounds assembled in the puzzle? When putting a puzzle piece together, do they say the target sound then, too?  Yes and yes

6. Reward Time

Give your child an opportunity to earn rewards for their efforts. Some children may need a reward after three exercises completed, but may be able to work up to 5 or 10 or more exercises completed. A reward can be tangible (like a sticker or small action figure toy) or a reward of time (like a five-minute break to play with the dollhouse).

7. Bedtime Reading

There are many fun books that are great for eliciting different target sounds. Some of our favorites for certain letters:

  /b/ - Five Little Monkeys Jumping on the Bed by Eileen Christelow
/ch/ - Chicka Chicka Boom Boom by Bill Martin Jr. and John Archambault
/d/ - No, David! By David Shannon
/f/ - The Rainbow Fish by Marcus Pfister
/g/ - Goodnight Moon by Margaret Wise Brown
/h/ - Hop on Pop by Dr. Suess
/j/ - Sheep in a Jeep by Nancy Shaw
/k/ - Caps for Sale by Esphyr Slobodkina
/l/ - Llama Llama Red Pajama by Anna Dewdney
/m/  Are You My Mother? by P.D. Eastman
/p/ - If You Give a Pig a Pancake - Laura Joffee Numeroff
/r/ - Red Rubber Boot Day by Mary Lyn Ray
/s/ - Silly Sally by Audrey Wood
/sh/ - Sheep in a Shop by Nancy Shaw
/t/ - Ten Apples Up on Top by Dr. Suess
/w/ - Mrs. Wishy Washy series by Joy Cowley and Elizabeth Fuller

We hope this list sparks some fresh ideas! Remember, shoot for progress, not perfection. And keep up with the positive reinforcement—verbal praise, high fives, fist bumps, or whatever your child responds to.

Happy therapy!


Becca and Kristi
Communication Community

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