Friday, August 14, 2020

The Disability Blogger Weekend Link-up is up and at 'em


What to do if you're new  

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

Like this: The story of a Lilly Pulitzer mask that used to be my dress

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

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

Wednesday, August 12, 2020

The story of a Lilly Pulitzer mask that used to be my dress

Years ago, before I had kids, I got a Lilly Pulitzer dress. My style is more city casual than Palm Beach chic, but I was in a boutique with a friend who loved fancy clothes (hi, Lisa!) and I paid big bucks for a floral print in juicy shades. Wearing it always made me feel fancy, like a lady who lunches, especially when I was on a summer weekend getaway with Dave. More recently, it's sat in my closet and mocked me for not fitting or having the carefree sort of lifestyle a dress like that promises. 

I occasionally give away or sell clothes on a local Facebook swap group. During one pandemic purge, I decided to offer up my dress to some lucky taker for a mere $20. For a couple of months, nobody responded, which seemed nuts—I mean, it was a classic Lilly Pulitzer dress! It was lined! I marked it down to $15. Crickets.

A few weeks ago, a woman in my town messaged me. Could she have the dress for $10? I agreed, if a little glumly. It wasn't the money; it was a part of my old life I was giving away for all of ten bucks. I wondered if I should have held onto the dress instead of going Marie Kondo on it. 

I left the Lilly in a bag by our home's walkway, half-hoping the woman wouldn't pick it up. A little while later, I looked out the front door and the bag was gone. I messaged her to say I hoped she'd enjoy the dress. She wrote back: "Thanks! I'm using the fabric for masks!"

WHAT?!?!

That would be the end of my Lilly Pulitzer dress, cut up into pieces?

It took me a minute for my mind to come around: What better ending for my Lilly dress. Actually put to use—important use!—instead of hanging in my closet and doing me no good.

I had to have one.

"I have fond memories of that dress and would like to buy a mask from you once you make them, please," I wrote.  

And the woman responded: "I would be happy to send you one!" 

I pretty much forgot about it until Monday, when she messaged to say that she'd finished the mask and would drop if off on my porch. Double the niceness! I was at work and later came down to find a bag. I opened it, saw the familiar pattern and felt so glad.

I washed it that night, let it air dry and slipped it on, wondrous that a mask could give me all the feels and grateful for a good deed at a time when life seems kind of cruel. 

Tuesday, August 11, 2020

Adventures in pandemic ear piercing

I haven't been inside a store since March—I've been ordering everything online, other than one trip a few months ago to an outdoor plant place. It had gotten to a point where I was feeling pretty neurotic about it. And then: Sabrina decided she wanted more ear piercings. She's been missing out on some teen rites of passage, and Dave and I felt she deserved it. I was going to have the honor of escorting her. 

I asked on my local mom Facebook page for recommendations for where to go, and got suggestions for a mall pagoda (nope), tattoo parlor (maybe?), and a mom-and-pop pharmacy a few towns over. I figured a pharmacy would be pretty good about pandemic safety practices. Little did I know. 

I called over, grilled the guy about quiet-ish times and booked a 9:30 a.m. appointment. We arrived a bit early, wearing our KN95's and gloves. We'd put our phones away, to avoid contaminating then. I had a credit card in my pocket so I wouldn't have to touch my wallet. There were a couple of other customers there. A guy in a mask handed us a form to fill out and a pen. A PEN! What a weird world we live in when a pen strikes fear into your heart. I used my own. 

We were seated in a nook, and there was a woman blowing up balloons right there. "We're trying to follow social-distancing rules, would you mind coming back when we're done?" I asked, thereby instantly mortifying Sabrina. 

The plan was to add two more holes to Sabrain's left ear, and one more to the right. I'm not sure why but they decided to do both sides at once, and another staffer approached. He was wearing a neck gaiter, only up to his nose. Yikes. 

"Would you please cover your nose?" I asked, and he did. In my head, I was thinking "OMG, you work in a pharmacy and you don't wear a mask right?!" Let alone the fact that gaiters don't offer good protection against the coronavirus, as a recent study found—and in fact can be worse than wearing nothing at all. 

After all the mask mortification Sabrina had endured, I figured that any discomfort from the ear piercings was not going to be a big deal. She was fine. Me, I was kind of a nervous wreck. I paid and made a beeline out of there. 

Back at home, Max admired Sabrina's ears. 

"I want to get my ears pierced!" he announced. 

UM.

Friday, August 7, 2020

The Disability Blogger Weekend Link-up: Share a post, read a bunch


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: Anti-worry strategies from special needs moms

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

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

Wednesday, August 5, 2020

Anti-worry strategies from special needs moms


A life-changing event that we could have never imagined would happen. Doctors without answers. Feeling powerless as a parent. Freakouts about the future. 

Yes, I'm talking about the pandemic. But this is also a description of how I felt 17 years ago, when Max was born and we found out he'd had a stroke. There are a lot of parallels between that time and what I'm grappling with now, especially the voluminous amount of uncertainty and worry I feel. 

Every mom worries about their child, of course, but moms of kids with disabilities have a whole other world of worry. This might be because doctors gave us grim news; we were told at the hospital that Max might never walk or talk and he could have hearing and vision problems, along with cognitive issues. One doctor said that his future looked "ominous." We also worry because we have preconceived ideas and expectations of how children "should" develop , and it takes a long time to let those go. 

Over the years, I've learned some anxiety-reducing techniques, the same ones that other special needs moms use as well. They were self-taught out of necessity, because it is not possible to go to work, be a calm parent or just live your life when all you can think about is whether your child is going to be OK. Some stuff that's helped: 

DON'T LET THE NEWS RULE YOUR WORLD

When Max was little, I tortured myself by reading the baby milestone newsletters and the What To Expect first year and toddler years books. Reading them was a painful reminder of all the milestones Max wasn't hitting. Finally, I unsubscribed and gave the books away. I still worried about his development, but not obsessing about the milestones better enabled me to focus on the inchstones—a sound uttered, eye contact made, fingers loosened and not fisted for a few minutes. Watching CNN at night at the start of the pandemic for hours at a time was having the same devastating effect on me. And so, I quit it. I check websites for news, but no more sitting in front of the TV and sobbing.

WINE. 

TAKE ACTION, HOWEVER YOU CAN

When a neurologist in the NICU showed me and Dave x-rays of Max's brain, we despaired. The doctor talked to us and Dave about brain plasticity, but I felt powerless. What could we do? During those two weeks of Max's hospital stay, though, I found out about Early Intervention from a social worker and contacted local EI coordinator. That was the one and only thing that brought me comfort during that time. Once we were back home, we got home enrolled and I started looking into extra therapies and alternate therapies and All Of The Therapies. It's how I've operated ever since: Research. Google (within reason). Network. Reach out to doctors and other parents, even specialists in other parts of the country—they are sometimes willing to share advice or recommendations. Doing what's within my powers to help Max takes the edge of the worry and, of course, benefits Max. 

As much as I'd like to come up with a coronavirus vaccine, that is not within my repertoire of skills. (Neither is cooking, if you ask my family, but please don't.) So in the last couple of weeks, as I've grown more anxious about the start of school, I've scheduled conversations. I had one yesterday with Max's principal about virtual learning and the best classroom placement for Max. Last night, I put out feelers to teachers I know about a preschool pod teacher for Ben and a few other kids, to be taught where and by whom, TBD. The future remains uncertain, but I felt so much better after getting conversations going. 

CREATE A DEDICATED WORRY TIME

Seriously. For years now, my worry time has ben 9:00 to 9:10 p.m., or as close to then as possible. I sit in the same spot, the comfy chair in our den, and give myself permission to worry about everything big and little. And when I get up, I shut the worries off. Once you get into the practice, it actually helps you quit worrying all day long because you know you have a dedicated time when you can let your freakouts fly.
 
PINOT GRIGIO, ANYONE? 

TALK TO EVERYONE

Raising Max has shown me the power of the parent hivemind—there is endless practical stuff we moms and dads know that experts may not, from the most comfy for foot braces to how to get a child to stop kick-kick-kicking the dinner table. I've picked up so much helpful info from my blog Facebook page and other groups for parents of kids with disabilities and parents of kids with cerebral palsy. As we make decisions about school, I've connected with lots of other parents and reached out to doctors and various educators in my network for thoughts and opinions. Knowledge. Is. Power.
 
GO BEYOND DEEP BREATHS

Deep breaths—from the diaphragm!—are what experts always recommend for de-stressing. So what if you have to lock yourself in your bathroom. And to be sure, you'll feel relaxed for a couple of minutes. Soon after you've taken those deep breaths, though, your brain will be headed right back to Worrysville. So this is what you've gotta take: Get your partner to TAKE YOUR CHILD/CHILDREN OUT OF THE HOUSE. Even for just an hour or two. That way, you can have time to think. That way, you can hear yourself think. Maybe you can even call a friend or, whoa, polish your nails. It might take all of your willpower to not spend the entire time cleaning and organizing, but having the house to yourself brings some peace and fresh perspective. Especially these days, when we're all on top of each other.

EVEN MORE PINOT GRIGIO. 

TRY SO HARD TO QUIT PEERING INTO THE FUTURE

When Max was an infant, I had so many questions about what he would be able to do—would he ever take steps? Would he be able to understand me? Would he be able to play with toys like other kids? Would he ever say "Mommy" or "Daddy" or any words? It took me a long time to accept that my boy Max was on his own timeline, and nobody else's. I just had to take things day by day and focus on the child in front of my eyes, not the one I wondered if he'd be. 

The same has been true for the pandemic. Deciding whether or not to let Max stay home from school has been hard, especially because it seemed like we were basically deciding the entire 2020/2021 school year. I had to force myself to focus on making a decision just for the start of the academic year, and then it didn't feel so monumental or depressing. Max likely will do virtual schooling for a while. But thinking only about the immediate future gave me focus. And once we had a decision, it was such a relief.  

ENJOY YOUR PINOT GRIGIO!

Photo: Twitter/@joncmu

Monday, August 3, 2020

Back-to-school plans, back-to-school panic


Like most parents, I'm usually excited to send my kids back to school. This year, that prospect is causing a whole lot of stress. Max's official school reopening plan came out on Friday. It calls for students to be in school from 8:45 to 12:45, no lunch break. Students will mainly stay in their classrooms except for therapy and sensory breaks. There will be a Covid-19 risk assessment questionnaire to be filled out on an app daily, and students will have their temperatures checked before entering the building in temporary tents. The staff must wear masks, and it is "recommended" that students were face coverings or masks; disposable face shields will be provided. 

The virtual option, if you choose it, will involve a Zoom livestream of the teacher talking—but not of fellow students in the class, to protect privacy. We have to let the school know by mid-August if we're choosing the remote option. 

The plan noted that the school had come to this decision because virtual instruction lacked immediate feedback between teachers and students, structure and routine, along with direct access to therapists, social workers and behaviorists, too. This is all, of course, true—virtual schooling has its drawbacks, and may not work in part or in totality for some students with disabilities. But what's also true is that this virus doesn't care about that.  

At least this video, featuring Alabama high school principal, gave me a laugh.

I've been troubled by reports of the coronavirus spreading around camps, including one in Georgia in which nearly half the campers and staff came down with the coronavirus. Masks were not required there. One thing weighing on my mind is whether students at Max's school will wear masks and wear them properly. Even if students maintain a six-foot distance, it's possible the virus could infiltrate the air. And yes, I have pandemic paranoia. So much is still unknown about Covid-19.

Max doesn't have sensory issues with the masks and has been pretty diligent about wearing them; there have been times when he's reminded us to make sure we bring ones when we take walks. It's the other students I worry about. That and the fact that asymptomatic people can spread the virus around, new research shows, as rare as that may be. 

Hygiene can be tricky when you're talking about a school of students with physical and/or intellectual disabilities. Max is not able to efficiently wash his hands alone; he would require help. I'm wary of him going to a public bathroom. And what if a fellow student decides to give him a high-five? 

Max was scheduled to go into the Work Experience Cluster, where he would have started doing some work sampling in school—such as collating brochures for a hospital. But that won't be happening, given that students are staying in their classroom, and it's still unknown what sort of work-oriented activities might be done in class. 

We haven't yet figured out plans for Sabrina (no word from her school, although the goal was to return to school) or Ben (who'll be in preschool but I haven't yet enrolled him). If Max does virtual learning, sending them to schools could pose risks to him, too. Max's mild cerebral palsy likely does not put him at higher risk for complications, I've learned, but a high fever can and has triggered seizures.

Then there's the whole bus situation—no word yet on that. Not that we'd feel at all comfortable letting Max go on a bus; we'd have to drive him both ways.

Max did really well with Zoom classes in the spring, and that was awesome. It's unfortunate that he will not be able to interact with his classmates, per the school's new policy about virtual learning. Max's neurologist recommends he stay at home (this doc is keeping his own children at home, too); I have a call in to the pediatrician to discuss it. 

Given how unpredictable the virus is, it's entirely possible that in a few weeks' time or at some point this fall, our governor will declare that all schools are virtual. Max does want to go back to school, but at the same time he understands that he has to stay healthy. Every parent can only go with the decision that's right for their family. In my heart and Dave's, and in our guts, the decision is already made: Max will do virtual learning. 

Friday, July 31, 2020

The Disability Blogger Weekend Link-up: Come on in!


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 nicest thing someone's done for me lately

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

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

Wednesday, July 29, 2020

The nicest thing someone's done for me lately and the big-time joy of small kindnesses


The basil was sitting in my fridge for a good week before I got around to using it. I'd poked holes in the plastic bag to help keep it fresh but dang, it wilted. It was fine for a salad, not so much for the tomato, basil and mozzarella plate I'd wanted to make for Sabrina and Dave. For that, you need pretty basil. 

A neighbor had posted in our neighborhood Facebook group that she had an abundance of basil, and I'd claimed some. We are not one of those families that has managed to get it together and grow our own pandemic produce. But I was eager to make that dish. I messaged Stephanie—did she have any more basil, just a few leaves? A few minutes later, she replied: "I can snip a bunch for you." She left them on her front porch. Yesterday, I surprised Sabrina and Dave with the dish at lunch and got happy grins in return. I zapped Stephanie a photo, with a thank you. 

These days, gestures like sharing garden goodies mean a lot.

Little kindnesses are a reminder that as socially isolated as we may feel, people are still thinking about each other.  

Little kindnesses remind us that human connections and care endure, despite a virus that has torn our country apart in many ways.  

Little kindnesses are refreshing treats in days that blend into each other.

Little kindnesses are an antidote to the seeming selfishness of people who refuse to wear masks. 

Little kindnesses are the lifts we need when the news and the world itself seem oppressive and sad. They are comfort food for our souls. Just thinking about them gives me the warm fuzzies.

This week, a wonderful woman Max met at his sleepaway camp sent us yet more masks she'd sewn for him and for our family. Months ago, my sister brought me a watermelon-flavored lip gloss that we loved as kids. The gold tin has been sitting on my dresser ever since. I haven't much used it; it makes me happy to simply see it there. When I'm working in the attic, Dave often brings me a sandwich and drink for lunch (I call him DaveDash), and just the sound of his feet trudging up the stairs gives me a lift. A guy in our neighborhood regularly asks me if I need anything when he goes to a grocery store or drugstore, because he knows we're still not going to stores. We're doing fine with getting stuff delivered, but every time he asks, it is so comforting.  

Being the person doing a kindness can be just as enjoyable. I was legit thrilled to present that tomato, basil and mozzarella dish to Sabrina and Dave. Recently, when someone asked if I had a couple of extra masks because they were needed for a plane flight to to visit an ailing parent, I was glad to mail her some. That person was really grateful, and I felt great sending them to her. Win-win. Mother Teresa I am not, as I've often said, but it was no big deal. 

Our days are long. The future is uncertain. The anxiety can be overwhelming. Whether we're giving or receiving, we need those little kindnesses, now more than ever.

What's the nicest little thing someone's done for you, lately? 

Monday, July 27, 2020

Virtual programs and classes for children, teens and adults with disabilities


After I found out last week that the New York City Ballet was offering free virtual classes for children, teens and adults with disabilities, I decided to ask on the Love That Max Facebook page what other virtual programming people had heard of. Here, a list of places I've heard of; most of them are free If you know of other online programs or classes for children, teens and adults with disabilities, please share!


The New York City Ballet is offering free weekly Access Workshops via Zoom.  The ones on Wednesdays at 12:00 PM ET are for children ages 4 to 12 (click here to sign up); the ones on Tuesdays at 3PM ET are for teens and adults (click here to sign up). Each are taught by an NYCB dancer, and will take place through the week of August 17. 

Only Make Believe—a nonprofit that typically creates and performs interactive theatre for kids in hospitals, care facilities and special ed programming in New York City and Washington D.C.—is offering free online interactive theater. Click here to get started

The HSC Pediatric Center's program Kids in Action has a wide variety of online activities for kids—check their Facebook page here.

Spectrum Creative Arts is offering fee-based virtual music, art, dance and theater to students with special needs. You can submit a form here to get started. 

Steph "The Hammer" Hammerman is the world's first CrossFit Level 2 trainer with cerebral palsy. She is offering an adaptive focused class on Mondays and Wednesdays at 11 a.m. EST, for free until August 1 for people with CP, then launching a paid website with programming ($20 a month, unlimited). You can email her for more info at staying.driven@gmail.com

Friendship Circle of Michigan offers Jewish-themed virtual programming for children with special needs. 

KEEN (Kids Enjoy Exercise Now) a nonprofit that offers free fitness programs to youth with disabilities, has free virtual programming through local branches in Chicago, Greater DC, Los Angeles, New York, Phoenix, San Francisco and St. Louis. Click here to find a branch

Bridgewell Family Support Center has 30-to-45-minute daily classes for adults with disabilities that include dance, fitness, singing, stories, music, arts, crafts, yoga and show and tell. Program director Judith Doherty mentioned on the blog Facebook page that they welcome all ages and abilities in their groups. You can see the weekly calendar on this page (scroll down) and you can email her for Zoom log-in info at jdoherty@bridgewell.org

Cosmic Kids Yoga: Children of all abilities are obsessed with this YouTube channel and its perky yoga instructor. 

Friday, July 24, 2020

The Disability Blogger Weekend Link-up: It's OK to be social here


What to do if you're new  

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

Like this: Helpful Information About Masks—What To Buy, What's A Scam & How To Reuse 'Em

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

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

Wednesday, July 22, 2020

Helpful information about masks—what to buy, what's a scam and how to safely reuse 'em


I had a long chat the other day with a man who owns a medical supply company, my idea of a good time these days. My friend Michael, who runs a nursing home, connected me with him. This guy has been selling masks long before they became trendy. We bought some KN95's from him, which are the same as N95's but they're made in China (here's a good overview on masks from the FDA).

I wanted to be sure we got KN95's from a company approved by the FDA for sale to the U.S. We mostly  wear fabric masks when we are outside. But Dave has had to travel for work, including getting on planes and going inside offices, so we needed some on hand. 

In general, be careful where you buy your masks from. We got ripped off by a site named Duvely back in March, when I was in pandemic panic mode. I bought masks billed as "medical protection masks/Coronavirus filter masks" and failed to read the full description on the site:
 

The above has since been taken down; I grabbed a screenshot after I realized we'd been duped. What we received were masks described on the packaging as a "fashion dust mask." Note the full description, especially the part where it says it will prevent smog, dust, sand, haze and other contaminants from "inhaling the human body." Ha ha ha. The joke was on me.


Did I mention I paid $17 a pop?! (See: "pandemic panic.") There is a special place in hell for companies that rip off people trying to protect themselves from Covid-19. I tried to return the masks, but they needed to be mailed back to Peru—and the shipping cost was $149.25. I ended up reporting Duvely to my credit card company. As we chatted, the rep told me about entire states getting scammed by people selling bad masks.

The guy I was talking with at the medical supply company also noted that there are a ton of counterfeits out there. As he said, "Buy a KN95 from a gas station and there's a good chance it's a counterfeit. Same goes for any that are super-cheap, like one or two bucks. They're just not available at that price." We paid $3.25 each for ours.

I asked him for some tips about caring for KN95's and other masks. He recommended removing them from the ear loops, not from the front part, to keep them free of dirt and natural oil on fingertips, and to keep the filter intact if there is one. He also advised tossing the KN95 after every four non-medical uses, as sweat and respiration could make the filter start to decompose. I put a little pen mark by the ear loop every time one of us wearS one, to keep track. 

A few other key pointers:

• Wash your hands before putting on the mask. Perhaps you are already obsessively washing your hands or making your kids do so? 
• If you put on a KN95, hold your hand over your nose, exhale and you feel your breath, tighten the nose clip.
• Do not microwave KN95's or spritz them with alcohol or hydrogen peroxide as it can make the filter decompose.
• Do not ask me where all your family's masks have gone. I can't find ours, either. Maybe they're with the missing socks? 

Monday, July 20, 2020

A guy with autism walks up to us and...


Last night, we drove to an ice-cream place where you call in your order and they hand it to you at the door. I stayed in the car with Ben as Max and Dave walked over. When they returned, a guy ambled over from the outdoor seating at a nearby restaurant. Max had been saying how much he loves ice-cream.

"Does he have autism?" he asked. I instinctively knew that this man did.

"No, he doesn't, but you can ask him," I said. 

"Does he have special needs?" he persisted. 

"Yes," I acknowledged. "But you can talk with him!'

He wasn't wearing a mask and Dave said, "Please, can you stand a little farther away, we'd love to talk with you but we're social distancing."

And he said, "Yes, social distancing is good."

He wanted to know what school Max goes to. When Max told him, he said it was his old school. He asked a bunch of questions: What teacher did Max have? What year was Max born? What year was Max's brother born? Why were we in the area? 

When he asked where we lived Max said, "L.A.!" I explained that Max's dream is to move to L.A. but we actually lived a couple of towns over. His name was Ben, just like Max's little bro. He was 34 years old. I asked if he was eating with his parents at the restaurant and he said yes, and that they were very nice parents.

Before Max, I probably would humored this man, even as I felt a little wary. But I was genuinely glad to chat with him—he had a lively personality and seemed so interested in making a connection. I appreciated his conversation skills. I appreciated that Max was making conversation with him. 

We talked a bit more. He said he was sorry that Max couldn't talk so well. Max said, "It's OK!" WHICH WAS THE BEST, because I have forever told people not to feel sorry for Max but there was Max, letting it be known.

We said goodbye and then Dave helped Max eat his ice-cream. 

"Ben is very nice!" Max said, and I agreed. 

The ice-cream was delish, made even sweeter by an unexpected encounter. 

Friday, July 17, 2020

The Disability Blogger Weekend Link-up: right here, right now


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: If our kids can't go back to school anytime soon, here's a radical thought: DO-OVER

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

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

Wednesday, July 15, 2020

If our kids can't go back to school anytime soon, here's a radical thought: DO-OVER


Ben has a little responsibility chart that hangs on a wall in our kitchen. We've fallen off doing it these last few months or, rather, I have. But the other day, we got around to it and we put on stickers for stuff he'd done: dressed himself, ate his meals, was kind to someone. We both paused at "I enjoyed school." Ben looked at me: "There's no school because of coronavirus," he said, matter-of-factly.

Oh, that pained me. I was aware that he knew that Covid-19 exists, but the simple way he stated that made it seem as if he has accepted that reality—a disturbing reality. Especially because there is a good chance he won't be back in school this fall.  

Across the country, it's the topic on every parent's mind. I read a powerful New York Times Op-Ed yesterday, America Drank Away Its Children's Future, about how the early reopening of states has imperiled our children's education. Perhaps, like me, you've read this well-written viral Facebook post by a dad in Clifton, Virginia (note, it's been pointed out that his math is off—while he states children only die 0.0016 of the time" the correct stat is 0.0016 percent—aka 0.0000016). I've read comments by teachers who fear risking their lives with a return to the classroom, along with ones from dual-income parents who depend on school and who will struggle to support their family without in-class learning. 

I am as distraught as you all are by the thought that my children may not go back to school this fall. I am concerned about the lasting effect on their education because online learning just isn't the same. I am bummed that Max is missing out on work experienced—he'd decided to take the work track next year before the pandemic came along. I am concerned about the lack of socialization. 

Even if our children aren't articulating it, they feel it, too. This is what Max wrote on a paper he filled out on his last day of the spring school term:


We live in New Jersey, when school typically isn't back in session until after Labor Day. There's no word yet from any of my children's schools (they're in three different ones). Since there is a distinct possibility that Max's school will open but it won't be safe for him to return, I had our district coordinator add a couple of lines to the IEP that the team will reconvene to review Max's needs once our governor had decided whether or not school buildings will reopen.  

But here's what I've been pondering: Maybe, just maybe, if the worst-case-but-safest-scenario comes to pass and our children don't return to school, they could get a do-over. Maybe some children with disabilities should be held back for a year. Maybe entire classes should be held back—in a planned way. Curriculums could be rethought, so that material is not completely repeated. And yes, I am dreaming but this is wholly uncharted territory and there is a lot of reassessing, reevaluating, rethinking and reimagining that needs to be done. Why should we expect our students to be able to pick up where things left off when they were last in a class? 

Losing a year of classroom learning is a significant missed chunk of education, particularly so for students with intellectual disabilities who are also missing out on learning life skills, therapies and job training—stuff that we parents cannot possibly replicate at home. Extended School Year (ESY) was established to ensure that students with intellectual disability retain knowledge and skills over the course of the summer. Right now, we could use an Additional School Year (ASY) to make up for what's been lost. 

ASY would be especially invaluable for the students who haven't been able to participate in virtual learning or whose districts are not doing the most fantastic job with the online thing. And sure, now districts have had practice and if kids go back to school but then we revert to quarantining, they may have a better handle on it. Yet the truth is, some districts may never get it together for virtual learning. Or some teachers, to be honest.  

To be sure, holding students back a year will not help parents with the immediate challenges of homeschooling, nor will it help students with the ongoing gap in socialization or therapies. But at least, if parents knew that repeating a year was a possibility that's been planned for, we'd feel comforted to know our children will have the opportunity to make up for lost education. And so what if our children graduate kindergarten, elementary school, high school or college a year later. That will not matter much in the scheme of life. What is a year? In fact, the longer our children are in school, the better. I've heard way too much about the so-called cliff adult children with intellectual disability fall off of once they no longer have the structure of school in their lives.

Parents and teachers alike want children to get ahead in life. But right now, as school teams, districts and our local governments weigh the possibilities for the fall and the 2021 school year, they should also be pondering how students might be able to catch up. A do-over can take the pressure off the decision to return to classrooms. It would be a tremendous relief to parents and to students, too.

I am no education expert. But I do believe that choosing whether or not to send children back to classrooms is not the only choice we should be pondering right now.

Monday, July 13, 2020

I won't always be there when he falls, and that's just the way it is


Max likes to take long walks around the neighborhood, often after dinner. Along the way, many neighbors say hi to him and keep an eye on him, as I've been told. Max also wears an Apple Watch and I can track him or call him as need be, so I've grown comfortable with this arrangement, and Max thrives on the independence. 

Last night, I had to run and pick up something from a friend's porch. I buckled Ben in the car and went off to find Max to see if he wanted to come. I spotted him crossing a street and as I neared, he stepped onto a curb and fall down on a patch of grass. Max scrambled to his feet, then saw me headed toward him.

I jumped out of the car: "Max! Are you OK?"  

"Yes!" he said, and basically waved me off.

"Did you want to come for a drive?" I asked.

"No thank you!" he said, and ambled off. His knees weren't bruised and his walking was fine, so I let him go.

It was terrifying to see him fall. The street happened to be empty and if I hadn't been there, nobody would have seen it or asked if he was OK. And what if he'd fallen on concrete and really hurt himself?

My mind cycled through the scenarios. 

If he'd fallen and not been able to get up, someone would have eventually seen him—our neighborhood is a busy one—and let me know. If he was able to do so, he would have known to call me or Dave from his watch.

If it was someone passing by who didn't know Max and saw him lying there, hurt, would they have understood him when he told us our address? Maybe, maybe not. If not, they might have called the police. And what if a Bad Person driving by saw Max, incapacitated? 

If the police would have come, would they have understood him when he said his address? By that point, would someone have shown up who knew him? And what if an ambulance was necessary? 

It was like a twisted form of that book If You Give a Mouse a Cookie. My brain was in total freakout mode.   

A few minutes after Ben and I returned from our errand, Max walked in.

"Did you have a good walk?" I asked.

"Yesssss," he said.

"You're sure you didn't get hurt?" I asked. 

"No!" he said, and flashed me a grin. 

Later, we talked more and I made it clear that if if he fell again and he got hurt and he was alone, he should call me or Dave. The truth is, Max is going to fall on occasion—curbs and uneven pavement are a longtime hazard—and we have to accept that. This is going to be true of many parts of Max's life as he gets older, and we'll have to figure out ways to enable and help him. We're going to find a spot on his phone where we can program in our address, so he can show it to someone if need be—he's proficient at navigating the screen. 

Soon enough, he headed down to the basement his Max cave to watch TV. He was struggling to open the basement door. 

"Max can do it!" Ben announced. 

Sure enough, he did. 

Friday, July 10, 2020

The Disability Blogger Weekend Link-up never stops


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: Fish chowder, a blankie, the Max cave and other self-medicating stuff

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

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

Tuesday, July 7, 2020

A visit to Brooklyn


I visited my mom this weekend for the first time in nearly four months. She lives in Brooklyn in an apartment building we moved to when I was 12. It's an old-school building—no doorman, just a glass door with a lock, a lobby that doesn't try too hard or try at all, and six floors of apartments with hallways painted Depressing Beige. I found a parking spot (each time, it's like a miracle) and walked the empty street to my mom's. Not surprisingly, the gaggle of senior citizens who usually sit outside the entry in folding chairs weren't there.

Mom was, as usual, wearing one of her housedresses. Vintage, some might call them, as most have been around since I was a kid. I'd brought her 2020 tributes of love: a bottle of Clorox spray, masks and disinfecting wipes. She is one of the more selfless people of the world and inevitably she said, "Ellen, keep them for yourself! You'll need them" So when she wasn't looking, I stuck them in the cabinet beneath the kitchen sink. I cleaned the kitchen and her bathroom and tossed the expired food and plastic utensils she insists on reusing. 

We sat on the sofa and talked about her grandkids, life, politics and the weirdness of the pandemic. My mom was born the year of the Great Depression, and we discussed how her parents had survived the 1918 flu pandemic. "My mother was the most wonderful person," she said. "I'm not nearly as good as she was!" Which was funny, because I think my mother is the nicest person I have ever known and I that I fall far short of her. She told me how her mom used to volunteer at The Brooklyn Home for Infants, an orphanage, which I hadn't known. 

I asked my mom to make a video for the kids. She spoke, as she always does, with so much warmth and care: "Guess what? I love each and every one of you, collectively and individually....I send you a zillion trillion kisses." I cried as she spoke but she couldn't see it behind my mask. 

Mom was hesitant to go outside—it was a hot day—but she hadn't seen sunlight in a while and I thought it would be good for her. She eventually agreed. We put on masks, rode the elevator and she gingerly walked the five steps down to the lobby, making me painfully aware of how frail she's getting. Mom stood on the building's brick stoop, where she greeted everyone who walked through the doors. It's a pretty communal place, and the management treats tenants pretty well. A few weeks ago, everyone found a couple of tickets in their mailboxes to use at an ice-cream truck management had hired; it showed up on a Sunday and people stood at a distance and got their treats. Mom didn't go. 

A guy walked in who I hadn't seen in years. I thought his name was Milton but if not, it was a good guess for an older guy living in an apartment in the middle of Brooklyn. We got around to the subject of masks, and he said he'd been wearing the K95 on his face since since March and the other day he'd walked 15 miles to a doctor's appointment—!!!—and it had started raining but he shielded the mask with a magazine. I mentioned that he needed a new one because there was only so many times that you could reuse a K95, then he peppered me with questions about masks until I politely said I was no expert.

"Ah, she's so modest, my daughter is highly intelligent!" said my mom, because: MOM. If she only knew that as we were speaking, the only thing I kept thinking was: At what point do men grow ear hair? No matter. Nobody on this earth will ever love you like your mom loves you. 

After a few minutes, we went back inside and my mom slowly climbed the five steps back up to the elevator landing, leaning on my arm. We noticed a box sitting on a windowsill that had "Gloria" scrawled on it and realized that it was a food delivery for her. 

I pressed the elevator button with a gloved hand but the car was stuck on "B." I have always been terrified of basements in apartment buildings. The one I grew up in had an ancient dark one, and I have a vaguely horrifying memory of the furnace and an open door where you could see fire roaring. 

When the elevator didn't arrive after a few minutes, I rang the superintendent's buzzer. No response. I called my sister, Judy, and asked her to give him a call. Then a woman walked by who said she'd been in the basement doing laundry and the elevator was stuck. My mom had to climb four flights of stairs. She didn't complain once, but looked pale and drawn by the time we got back to her apartment. She rested on the couch and I got her water. As I unpacked her food, she asked if I wanted to take any home. Mom!!!

I puttered around a bit more. I threw out a dusty box for a clock sitting on a table (my dad was a big proponent of keeping the boxes stuff came in) and a stash of empty plastic water bottles and admired an old chubalicious baby picture of Judy. I realized the air conditioner filter hadn't been changed since forever and ordered one. My mom urged me to get home in time for dinner. I made sure her meal was set, kissed the top of her head with my mask still on and headed out. 

Monday, July 6, 2020

Fish chowder, a blankie, the Max cave and other self-medicating stuff



Max cried when we got home from the Jersey Shore on Saturday night. It's a tradition in our family, the sign of a great vacation. Typically, Max would just mope around for the next few days and repeatedly ask when he was going back. But Max has matured and this boy knew just what would make him feel better—a truly useful life skill. 

It started before we even left our beach condo. Max insisted on bringing home the blanket he'd been using that week, a new white cotton number. Max is not usually one to have an attachment to things. This used to worry me when he was little, because everything worried me when he was little—I didn't get why he didn't have a favorite stuffed animal. And now, at 17, he finally had a blankie, a memory of the good times we'd had during our trip. We took it home on Saturday. 

On Sunday, for breakfast Max wanted the same kind he'd been having at the shore: a cherry cheese Danish. We'd been going to a local bakery that makes great apple turnovers, and it turns out Max has a thing for cherry cheese Danish. So Dave googled and found a bakery in a town near our house known for theirs, and off they went. Afterward, Max sat on his iPad checking out houses for sale at the Jersey Shore. 

Lunchtime? Only fish chowder would do~ Off went Max, Dave and Dave's dad, in search of seafood that tasted like vacation. It was a true happy meal. 

In the afternoon, Max retired to his Max cave—aka our basement—where he likes to chill out with his iPad. I didn't ask what he was watching but I'll bet anything there was some fantasy beach home browsing. He emerged a couple of hours later in time for an evening BBQ. Dessert was key lime pie, courtesy of Sabrina, who had her own desire to keep the vacation vibes going. 

Max crashed in our basement last night. (Not pictured: his blankie, which was in the wash.) I went down at 11:15 to toss laundry into the dryer and he was still up, determined to stay on his vacation scheduled despite the fact that today he went back to virtual school. 

"I'm still on vacation!" Max said.

I wasn't going to tell him otherwise. I tucked him in, turned off the light and went back to reality. 

Friday, July 3, 2020

The Disability Blogger Weekend Link-up: Make some fireworks edition


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: For anyone who thinks people with disabilities are so different, I give you: sibling rivalry

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.

A great store for shades: a guest post by Sabrina


This is a guest post by Sabrina. She recently tried out SmartBuyGlasses, which she reviewed in exchange for a pair of shades. Her opinions are firmly her own, however. As usual.

Now that summer is here, everyone wants to feel prepared for hot days. Sunglasses are the most important essential, since they keep your eyes safe and they keep you super trendy!

I went shopping on SmartBuyGlasses.com to find the perfect pair. You can easily look up your favorite brand, or if you have a hard time choosing like me, there are a variety of designs and styles you can browse. The site is really well organized, the prices are good and the shipping is free. There is even a "best price guarantee" and if you find a better price after 14 days of buying a pair, they will match the price.

What's especially awesome is that you can do a virtual try-on to see how you look in different styles of glasses. All you do is take a five-second selfie video on your computer (a video tells you how to turn your face for the right angle). Then it tells you your face shape—it said my face shape is oval, with a chin slightly narrower than my forehead, so all frame shapes and styles would work for me. 

After you take the selfie, you click "go to try-on." Whenever you want to see how you look in a pair, you just click "selfie view" and the sunglasses pop right onto your face. It's fun and helpful, especially since a lot of stores aren't open right now. It's also a little addictive!

I especially love Ray-Bans, and my mom refused to buy me a new pair after I lost my last one so here was my chance! I got the hexagonal metal flats style. Now I just need to keep them out of my little brother's hands.

The people at the store are offering readers a 10 percent discount—just enter the code LOVETHATMAX10 at checkout. Wishing you a happy and healthy summer!!!

Thursday, July 2, 2020

For anyone who thinks people with disabilities are so different, I give you: sibling rivalry


We're on vacation this week at the shore, which has helped us all chill out and also provided many new opps for the rivalry that exists between Ben and Max.

Who will zoom out of the condo and get to the elevator first?

Who will get to the car in the garage first?

Who will finish their donut first?

Who will get to sit in the front of the golf car we rented?

Who has the bigger share of pasta?

Who will have their pajamas on first?

And so on and so on and so on. OMG.

These two can go at it pretty intensely. At first, it was surprising to me because of the 13-year age difference. But I guess it makes sense. Ben resents the extra attention Max gets since he has cerebral palsy and occasionally needs a hand. Max resents the extra attention Ben gets since he's a little guy who occasionally needs a hand. Sabrina is Switzerland—she doesn't get into arguments with either one of them.

Max and Ben are each pretty good at standing their ground and roaring at each other, perhaps skills that will come in handy someday (or so I like to tell myself). Max may have disabilities, but he is as competitive as any sibling. It's as nerve-wracking to me and Dave as it is to any parents, and we  regularly play peacemaker.

Things came to a head on the basketball court the other evening. Ben and Max were supposed to take turns over who had the ball, which wasn't working out so well and there was a lot of shouting. Then Ben scored a basket and we were all impressed...except Max.


Max had the ball next and even when he missed the hoop, it was pretty amazing to see him lifting his arms over his head and throwing that ball around.

As he kept taking shots, Ben shouted "Max, you're really bad!" I told Ben that was not OK to say and that Max was trying his best.

BUT MAX WAS GOING TO SHOW HIM!!!!!

"I'm very GOOD!" Max announced, took a shot, and swish. Revenge basket!

Sibling rivalry wins.

Wednesday, July 1, 2020

How parents of kids with disabilities can learn to get out of their own way


This guest post is by Jane Kim. A writer and mom of an eight-year-old with autism, she works in the field of immigration and lives with her family in the Philadelphia suburbs. 

When I was younger, there were things I believed would happen when I became an adult. My house would be organized (nope). Dinner would never look like this (it does).


My salary would be 25% more than what it is. My child would play Chopin, be witty and kind, and be a formidable tennis opponent by thirteen (nope, yes and yes, not yet.)

No one tells you you’ll be OK even if things don’t happen as you envision them. And that you’ll likely be even better than OK. 

Our kids are our lives, so it’s often hard not to let go of our expectations of what they should do, how they should act, who they should become. While all parents grapple with this, it can be more difficult for parents of children with disabilities, because challenges and limitations often present themselves earlier than in typically developing children. When I first received my son’s ASD diagnosis, it was a scary and lonely time and the future was bleak. With time and support, I was able to reframe my mindset and focus more quickly on what was working, rather than what wasn’t working. I’ve developed the capacity to adapt more quickly over the years, and this has had the biggest impact on my ability to get out of my own way. 

Don’t get me wrong: It can be easy to wallow in self-defeating behavior. The hard part is identifying those triggers that set you off. When it comes to my relationship with my son, the following adages have helped me be a better mom and human.

There isn’t only one “right” way.  
My son’s class was celebrating Valentine’s Day, and his teacher informed the parents that the kids could bring in Valentine’s cards for their classmates, to have a party and card exchange. Remember those brightly decorated paper bags with your name on it? And how excited you were as a kid to receive and exchange cards? 


I certainly do! I loved reading the heartfelt messages and seeing whether candy, stickers or a toy were attached to the cards. But when I saw the email from his teacher, I became anxious.  My son struggles with writing – specifically, the motor planning piece of it – and I envisioned us sitting down for what  should be a fun relaxing activity ending with one – or both of us – in tears. Instead of him writing all 20+ names on the cards, we decided he would write his own name, type the names of his classmates, and then cut and paste thm onto the card. Voila.  A great time had by both, with some adjustments. 

Success doesn’t mean one thing. Stay focused on the big picture. 

It’s easy to worry about the things your child can’t do. We tend to focus on the “nots,” rather than on all the amazing stuff they can do. When my son was younger and playdates were nonexistent, I couldn’t imagine the day he would have a buddy, much less more than one.  But that day has already come. I couldn’t imagine him telling a joke or being sarcastic, some of the subtleties that come with more nuanced communication. But just the other day, I heard him giggling in the kitchen after asking Alexa to make fart sounds. However, I still worry every…single…day. I worry about him because he struggles with zipping his coat, and for some time, this goal has been on his IEP. Then I think about how he introduced a school play, how he can walk home from the bus stop, how he orders food at restaurants (and at the Starbucks drive-thru) and I think about what’s more important, in the big picture. I’ve learned that training yourself to recognize when you are going down the rabbit hole is key to both you and your child’s well-being.
When nothing goes as expected, remember to be kind to yourself.

Maybe you took your child to mini golf and she refused to play more than one hole.


Or perhaps he spent most of the dinner at your friend’s house going from room to room turning the ceiling fans on and off. Maybe you went to the movies and the only way she would sit through it was if there was an endless supply of pretzel bites and you massaged her arm while she ate it. When nothing goes as planned, we tend to blame ourselves. It took me many years to develop the ability to pause, remind myself my intentions were good (which is what ultimately matters) and give myself a break. Calling a friend, a brisk walk, listening to a podcast, relaxing with a face mask – all do wonders for rejuvenation. 

Trust actions, not words. 

When I was growing up, my mom stressed the importance of this often, and it left an impact. When your child has a disability, these four words can save you time, money, disappointment and frustration. You’ve likely experienced one or two of these scenarios: Your boss or employer says they understand your need for more flexibility, but your schedule remains the same. The board certified behavior analyst, the person in charge of supervising the people providing ABA to your child, keeps insisting she will add new goals and social activities to his or her programming, but never does. Rather than resenting them for the things you wish they would do, adopt a more proactive role and take steps toward the change you would like to happen. For example, propose a workable schedule to your boss and ask her if she would consider a trial period. Have a candid conversation with your ABA team. Share with them some of the challenges your child faces, and how new goals and activities can address these challenges. Your input as a parent is the most valuable, and your ABA team should recognize that.

Resist the urge to be defensive and accept constructive feedback.  

I know the areas in which my son struggles, and I know those in which he shines – but it’s still hard to hear about your child’s challenges from others. This year, we’re trying to figure out whether his public school is the best fit for him. There have been ups and downs. A few weeks into the school year, we discovered he wasn’t being given the opportunity to walk to the classroom independently after getting off the bus. There have also been pleasant surprises, like the time I was the guest reader, and was running late. When I walked into the classroom, he was excitedly reading to the class, unfazed by the empty chair next to him. 

Over the years, I’ve tried to take in information about my son with an unbiased ear. It’s hard and it takes practice. When I get constructive feedback that I may not agree with, or find myself getting defensive, I try to wait at least 24 hours to digest the information before responding. I’ve found that a new day can bring a new perspective – in addition to sparing you from regret! If it still doesn’t sit well, I’m lucky to have a couple trusted people in my life offer their perspectives, which broadens my own. Having them as a sounding board has been incredibly helpful.

Jane Kim can be found on Twitter @JKimRites.

Monday, June 29, 2020

Sometimes, things have a way of working out: Max goes to virtual camp


We signed Max up for a local virtual afternoon camp, run by a team that offers a program to youth with disabilities throughout the year. I wasn't sure how it would go—I was going to be working, our sitter would be mainly watching Ben, there were crafts involved and Max typically needs a helping hand. I also wasn't sure how engaged he'd be. He'd done incredibly well with virtual schooling; his teacher is animated and funny and knew just how to keep Max involved, but this was an unknown. I discussed Max with the program manager and said that we'd see how things go.

Max got started on Monday at 2:00. The location: our front porch. Campers ages 4 to 24 were split up into virtual cabins; he'd gotten a package with craft materials and snacks. There were 20-minute activity blocks, snack times and camp-wide activities, too. He seemed really into it and did fine doing the paper plate drawing, and when I checked in on him, there was a counselor and number of other teens on screen and he was cracking up.

"I like camp!" Max announced after it was done.

SCORE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The highlight of the week for Max was movie trivia. A counselor would show a series of symbols, and the group would have to guess the movie. I walked over toward the end of the game.

"Max must watch a lot of movies, because he's gotten almost every one right!" one of the counselors said.

Screen time for the win?! I'll take it!

As I watched, a princess, a castle and snow cropped up.

"ROZEN!" Max yelled, triumphantly. ("F" is not yet in his repertoire of sounds).

"Yes, Max, Frozen!" a counselor said.

Max beamed. I beamed.

As moms of children with disabilities everywhere know so well: You. Just. Never. Know.

Friday, June 26, 2020

Your invite to The Disability Blogger Weekend-Linkup: no RSVP necessary


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 mask wars: Don't hate on special needs moms who want to protect their children

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, June 25, 2020

Just a teen helping himself to a drink from the fridge


The other night, before Max headed to bed, I found him standing in the kitchen by the fridge, downing water from a cup. This was a little unusual—nobody was there with him, but I figured Dave must have gotten him a drink. Last night, I was in the kitchen when Max walked in, and what happened astounded me.

Max walked over the to the cabinet by the fridge, threw open the door and took out a plastic cup. Then he walked over to the fridge, which has a water filter, and poured himself a cupful. He guzzled it. "AHHHHHHH!" said he, like he was in a commercial for water or cerebral palsy or something. He tossed the cup into the sink, flashed me a grin and started heading upstairs.

WHO IS THIS BOY?! I thought, gleefully.

There are narratives we create about our children, knowingly or unknowingly. One thing I have long mentioned about Max is that he is not the kind of boy who could help himself to stuff from cabinets or the fridge. I've said it to Dave when I've worried about Max's skinniness. I've said it to sitters to help them understand Max's abilities (among other descriptions, of course).

And now, this boy is helping himself to water from the fridge. Maybe he's not yet grabbing snacks but I suddenly have hope that is possible, and I am going to be thinking about ways to enable that with single-size servings of stuff. Although we're in between occupational therapists right now, I am adding it to the list of life skills to work on.

When Max was little, I would not have believed that Max might someday be capable of serving himself a drink of water. Not because I didn't think he was an amazing, determined child, but because his needs were great and it was hard to picture him or life any other sort of way. Back then, we were working on just getting him to be aware of the fact that he needed a drink and to communicate it.

It's been a series of baby steps. Max learned the sign for water. He began to say "water." We tried a series of adaptive cups until we found one he could grasp. He worked hard on holding it and he did, although a lot of liquid would splash down onto his chest. His swallowing abilities evolved (swallowing involves muscles, which can be affected by cerebral palsy) and he was better able to retain liquid in his mouth. He became a boy who loved milkshakes—is there any better inspiration for maneuvering a cup to get every last drop of chocolate goodness? He became a teen who didn't care about having a special cup with handles, he just wanted to grab the same cups the rest of us use and get a drink.

I give you: Max.

Wednesday, June 24, 2020

If I'm home all the time, why can't I get more done?


I've been a mom for almost 17 years now. I've weathered the traumatic birth of my first child, juggled a full-time job and parenthood and successfully pulled off eleventy billion things to keep my kids healthy, educated, entertained, socialized and All The Good Things. And then comes a pandemic that has me housebound and yet, for the first time in my life, I am finding it impossible to get things done at home.

My job, I'm on top of. Our babysitter has returned and on work days, I hole up in the office in our attic and go to it. (Ben has only run naked into office Zoom calls twice!) But other parts of life at home are not holding up as well. Back in April, I was so fired up: I power-washed everything in the backyard, organized the basement, and tackled the garage, too. But now, mail sits unopened, it takes me five days to put away clean laundry, I can't keep up with texts from friends and when oh when am I going to get around to having the loose boards on our deck fixed? For months, Dave has been asking about putting up a photo of Ben among the family photos that line our stairwell. Still no pic of Ben. The days go by—Monday, Tuesday, Blursday, Blursday—and once again, I am left wondering where the time has gone.

I am one of those people who likes to get stuff done, and not GSD-ing makes me feel unsettled. One reason for this (er, besides three children) is that I've been going to sleep earlier, whereas BC (Before Coronavirus) I'd stay up late to plow through chores and paperwork, talk with Dave, and sit on the couch and write this blog. I'm not so much physically exhausted as I am emotionally fatigued and anxiety-ridden, and crawling under the covers is more appealing than ever.

The other thing that's happening is that I am utterly and totally burned out about picking up after everyone in my family. SO. BURNED. OUT. A few years ago, I wrote a post that went viral about all the itty-bitty stuff I handle in our household. (It was called "I am the person who notices we are running out of toilet paper and I rock"—who could have imagined that a shortfall of t.p. would be no joke?!) With everyone at home so much, our place gets extra-dirty and extra-cluttered. Routines have fallen by the wayside, and people aren't doing their fare share of chores. That leaves me Dustbusting the crumbs under the kitchen table, picking up wet towels off the bathroom floor, and the person in the backyard at twilight dumping water out of the plastic pool so it doesn't become mosquito larvae bait.

Could I care less about an organized existence? For sure. There are definitely days when I've stopped giving a damn. But at the same time, having a (somewhat) clean and (somewhat) neat home gives me peace of mind and a much-needed sense that life is under control even when our world is not. So I decided to put in a call to our company's Employee Assistance program, and snagged a few sessions with a therapist. I am glad to openly discuss this: There is no shame about seeking help you need and there should be no stigma around seeing a therapist, these days more than ever. Moms of children with special needs are juggling a whole lot, especially ones whose children can't do virtual learning or virtual therapy or who need hands-on care but aren't getting their usual help.

It may come as no surprise that data from an ongoing study funded by NORC at the University of Chicago finds that Americans are the most unhappy they've been in 50 years. (So far, no study has shown the percentage of moms emptying out pools in their backyard at twilight, although I suspect the number is high.) While good mental health is obviously important for everyone, parents owe it to their kids. As tired as I am of that oxygen mask metaphor about putting the mask on yourself before you share it with your children, the message is essentially true. If parents are feeling burned out, it filters down to our family.

These days, it's easier than ever to do therapy because many shrinks have gone virtual—no having to haul yourself to an office. Just grab a computer, find a hideout, log on and you're done. And if you don't have access to a therapist or this isn't the time to be paying for one (definitely check your benefits), weekly Zooms with friends can help. My other form of therapy takes place on Saturday night Zoom sessions with my two besties, where we group gripe, group freak out about the pandemic and the future, and group laugh.

Margie and I had a good session this week. I needed practical suggestions, and the best one I got was having a weekly family meeting to discuss both delegation of chores and fun things our family can do. My plan is to also get into what keeps every one of us feeling content and calm during these trying times, and how we can all help each other. (Max will for sure bring up his dream of moving to Los Angeles—maybe it's time to get him another L.A. t-shirt.) We'll be doing our family meetings Sunday night, complete with tasty snacks. And afterward, someone other than me will be Dustbusting the crumbs from the potato chips.


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