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.

I'd brought my mom 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. 

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 hers was set, kissed her goodbye and headed out. 

I could have taken the Verrazano Bridge back to New Jersey, but the navigator took me through New York. I like driving through the city for the sport of it, but this time the streets and roads were eerily empty. For the first time I can recall, there was not a speck of traffic getting into the Holland Tunnel. I emerged, squinting in the sunlight. 

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.


"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.


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.

Monday, June 22, 2020

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

In any other year, Facebook photos of graduates partying it up would be a happy thing. But these days, it's cause for alarm, anger and despair, especially among parents like me who have children with special needs. My friend Hallie Levine, mom to a daughter with Down syndrome and Graves disease who takes medication that suppresses her immune system, recently posted about what she was seeing in her town in Connecticut.

The parents posting the graduation photos, Hallie noted, "fought so hard for an in-person graduation ceremony and swore they'd be responsible about social distancing, and now this?" They should have insisted that their teens wear a mask or keep themselves at a reasonable distance, she continued: "I get that your kids are entitled to a beautiful graduation. But my child is also entitled to get the medical treatment and therapies he needs without me being fearful for her life.... I 'get' that it's an inconvenience, but my daughter has just as much of a right to a 'normal' life as yours. End of rant."

After Hallie posted that, people unfriended her on Facebook. "Some sent me nasty messages, including one that accused me of being a mentally ill drama queen who thrived on being judgmental and stirring up trouble," she told me. For the record, Hallie is a loving mom of three children and widely respected journalist, who recently wrote an excellent piece for The New York Times about the struggles families of children with special needs are facing this summer.

Hallie felt "shocked and sad" by the backsplash. "But I know I'm right," she says. "I talked to my pediatrician about it and she 100 percent agrees."

So. We have reached a point in this pandemic where protecting your child from getting a deadly virus makes you culpable. How scary is that?

As our country continues to battle the coronavirus, there is another battle happening: the one between those of us who fear for the safety of our at-risk children and family members, and the people who won't wear masks. Our family, like many, is getting around more and more although we still aren't going to any indoor public areas. When we're out, we are noticing a major lack of people wearing masks. It's became a troubling car game. "NO MASK!" Max will point out again and again and again as we drive around. Families taking walks on trails, playing sports in parks, runners in our neighborhood: no masks. And the situation is just going to get worse as the it gets hotter.

I hear about the mask wars constantly and see the posts on Facebook, including parents distraught that relatives won't wear masks at BBQs and other family gatherings. Someone was recently telling me a story about an immunocompromised young woman who went to a graduation party where her friends knew to wear masks and keep their distance—except one mask-less guy, who sat right next to her on a bench and told her not to worry, that all of this concern about catching the virus was over the top. She burst into tears and her friends quickly rallied and shooed him away.

Someone in my area recently took her mother-in-law, aged 90, out for a walk in a park where a big sign clearly stated, "Face Coverings Required." She put up a post on our local Facebook group that "75 percent of the people were not wearing masks. People would walk within one foot of her wheelchair and not even try to cover their face." She spoke out against neighbors who "don't give a crap about your health or care if you become another statistic." Angry words, to be sure, but they were coming from a place of deep concern. The responses were mostly supportive, noting common courtesy and decency and being a responsible human being, but mixed in were some that made my blood pressure rise.

Some faulted this woman for taking an elderly person out for a walk in a public place. Said one guy, "We don't live in a fascist post apocalyptic world guys. Respect social distancing hut we don't need the SS to enforce common sense." [Bonus vile points for referencing the nazis, jerk.] Another commenter wrote, "I refuse to wear a mask outside Please wear masks when around other people. It's not a huge ask!" and someone responded, "No, sorry, I won't do it. You wear yours and you'll be safe." WHICH IS NOT THE POINT. The point is that you can be a carrier or asymptomatic and unknowingly spread germs. In fact, the Centers for Disease Control estimates that as many as 35 percent of coronavirus patients don't have symptoms. And there is still so much that's unknown about this disease.

As weary as we all are of social distancing, as confining as it might feel to wear a mask,  as much as we'd like to believe the hot weather makes everything better, we remain a country at tremendous risk for illness and fatalities from the coronavirus. Other countries are shocked by what's going on here, as this Washington Post article noted. "It really does feel like the U.S. has given up," noted one infectious-diseases specialist in New Zealand. "It's hard to see how this ends. There are just going to be more and more people infected, more and more deaths. It's heartbreaking."

As parents and concerned family members, it's up to us to keep talking about this and trying to educate others—and it's up to towns to post signs about wearing masks and to remind locals, too. If people don't want to constantly wear masks, that's understandable. When I go out for a walk in our neighborhood, I don't always have one on, but I do have one in hand to slip on if I see someone approaching or I pass by people. And we always wear them in parks or other outdoor public spaces. It's no big deal to keep one in your pocket or purse and put it on on—on a hiking trail, on a street in town, wherever—or to steer clear by at least six feet if not more. It's not a nicety, it's a matter of life and death.

At the very least, don't hate on people who are speaking out to protect their children and family members. We aren't trying to go commando on your or ruin your summer. We are just trying to keep our children and loved ones alive.

Friday, June 19, 2020

The Disability Blogger Weekend Link-up likes you and you and you

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Wednesday, June 17, 2020

Children with disabilities were already socially distanced before this all started

The invites have been trickling in. Would we be game to go to a family's backyard party? Could Sabrina sleep overnight at a hotel for someone's birthday? What about a neighborhood movie night? No, no, no. Even if people are wearing masks and staying socially distant at gatherings, we are still avoiding them. This is one of the great paradoxes of the pandemic: We miss being around people. We fear bearing around people.

Sabrina and Dave have done a couple of socially distant one-on-one hangouts with friends but Max, Ben and I have mainly had each others' company these past few months, other than occasional chat with neighbors from a distance. We just started visiting grandparents last weekend.

For Max, school was his social life—the school days and the occasional after-school or evening event. Ditto for the summer camp he's gone to for the last several years, which isn't taking place this summer; he'll be doing virtual ESY (Extended School Year). "Next year?" Max asked when I told him camp was called off, because that's how positive he is.

Max has been doing really well with virtual schooling and connecting with his awesome teacher and classmates. He hasn't missed hangouts with friends at the mall or doing sleepovers because that was never part of his life. As social of a person as Max is, he has basically experienced ongoing social distancing throughout his 17 years. He does not have a circle of friends or anyone he regularly hangs out with outside of school or in our neighborhood. This is not uncommon with other children and teens I know who have intellectual disabilities. 

There are times when I've found this to be really sad. Mostly, it's a reality I've accepted since Max is content with his existence. I'd say that it's made the forced social distancing of the pandemic somewhat easier on him so far; he wasn't going to pool parties with friends, anyway, although missing camp is a big bummer.

Max has developed some good coping skills for the days he'll be spending at home. His fantasy life about moving to Los Angeles remains vibrant. He now goes by Pacific Standard Time; if he tells me he's going to sleep at 6:00, it means 9:00. He likes to answer homework questions with "si" or "no"—he learned some Spanish words while on a trip to the Dominican Republic, and I think it's a reminder to him of the good times our family's had on vacation.

Max has also been taking a lot of walks around our neighborhood. Occasionally, I'm allowed to join and when I do, it's like being in the company of a celebrity—every neighbor we pass by says "Hi, Max!" He waves and walks on. Dave's mom and father-in-law stopped by one evening last week and were amazed by Max's popularity.

Last night, Max's homework was a fill-in-the-blank summer story a la Mad Libs. The instructions said "Fill in the story with names of your summer friends." Max had just one to write.

The two of them usually love to roam around New York City or go on eating adventures. These days, they cruise through drive-ins and chill in parks. This summer, more than ever, Dave is going to be Max's BFF. I'd say they're both lucky. 

Monday, June 15, 2020

The double discrimination black children with disabilities face

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The stares.
The glares. 
The whispers. 
Being made to feel self conscious.
Being made to feel not wanted.
Being made to feel like a less-than. 

As I've thought about racism, discrimination and equality in the wake of the murder of George Floyd, my experiences raising a child with disabilities have come to mind. I've hesitated to write about this for fear of saying the wrong thing; I didn't want it to seem like I am saying the discrimination my Max has faced as a person with cerebral palsy is anything like the kind that black kids, teens and adults may contend with.

But the time has come for white people to stop avoiding conversations to avoid awkwardness. We need to talk openly about racism, or nothing will change. The truth is, our experiences form our perspectives and our ability to understand, empathize and relate. While I can't know what it is like to experience racism as an African American in America, I have seen a certain kind of discrimination in action and felt shock, anger and much pain. And I can only imagine how mothers of black kids and teens must feel at times, given the double whammy they have to contend with.

The moments are forever embedded in my memory.

That time in a bookstore a mother literally moved her child away from Max when he said "Hi."

That time in a restaurant some guy at the next table said "That kid doesn't belong here" when Max was talking loudly.

That time Max was shut out of a hotel camp program because of his disability. 

That time in an airport waiting area when a woman sitting across from us just gawked at Max until I said "Is there a reason why you're staring?" and she finally turned her head away. 

Those times over the years when strangers have asked if Max attends school, commented that "at least he is handsome" or otherwise implied that he is a lesser human being for having a disability. 

And that is just the prejudice and discrimination I have seen.

Imagine being a mother fearful for a child's life should a confrontation with the police occur because they are black and disabled. There have been several tragic incidents involving police and adults with disabilities in recent years, including a man with mental disabilities shot and killed by an off-duty police officer in a Los Angeles Costco in 2019. I remember a quote from an op-ed a mother wrote: "My son does not understand the law. But more urgently, the law does not understand people like him." Now pair that with the police brutality in our country toward African Americans—another double whammy.

The disparities for black children with special needs are legion. Black toddlers are FIVE times less likely than white toddlers to receive Early Intervention services for developmental delays, found a study published in The Journal of Developmental and Behavioral Pediatrics. Reports from the Autism and Developmental Disabilities Monitoring Network have consistently found that more white children are identified as having autism than black children or Hispanic ones. African American and Hispanic children are less likely to be diagnosed with ADHD than other races and ethnicities, reveals a study published in the journal Pediatrics. Cerebral palsy is more common among African American children than Caucasian ones, as the CDC documents—and there is a lack of research on the reasons for it. Black children are less likely to be enrolled in states' children's health insurance programs, research has found.

This all points to inequalities in prenatal care and in clinician support and advocacy for black children. The medical community needs to be examining its deep biases, too, along with police departments across the country. There are laws that can help protect our children because of their disabilities, including the Americans with Disabilities Act and the Individuals with Disabilities Education Act. I can't think of a law that protects black children with disabilities from the rampant inequalities that exist .

As always, our children have their mamas to help look out for them and take action. Maria Davis-Pierre, mom to an 8-year-old girl with autism, founded Autism in Black to support black parents and offer educational and advocacy services. Camille Proctor, mom to a 14-year-old boy with autism, created The Color of Autism Foundation with the same goals. But it shouldn't be just black mothers looking out for the well-being of black children with disabilities. It is the ob/gyn's responsibility, the pediatrician's responsibility, the schools' responsibility, society's responsibility.

And it is incumbent on us all to care—and to talk about this in whatever way possible. Even as white parents like me struggle with our white children with disabilities, we need to continue to speak up for those children who have double the struggle. 

Friday, June 12, 2020

The Disability Blogger Weekend Link-up goes on

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Wednesday, June 10, 2020

What we know about the coronavirus and cerebral palsy

When the pandemic became a reality in March, I didn't think Max was at more risk than my other children for complications from the coronavirus. Although he has cerebral palsy with an underlying seizure disorder, he is a generally healthy teen. But I soon grew concerned, hit up some doctors I know, worried more after I heard one of their responses, worried less after I heard the other, read a study that just came out and worried all over again. I'm sharing what I've heard from reputable sources and hoping that you will also chime in, since there is surprisingly little information out there about the coronavirus and how it affects people with cerebral palsy.

The fatality rate for COVID-19 for people with intellectual and developmental disabilities is 4.5 percent, compared to 2.7 for others, finds a new study published in the Disability and Health Journal. It tracked medical records of 30,282 people with the virus, including 474 with intellectual and developmental disabilities such as Down syndrome, cerebral palsy and intellectual disability. While the data did not reveal why people with IDD were more likely to die from the virus, the results did confirm that people with IDD are more likely to have underlying conditions including heart disease, respiratory disease and diabetes often associated with poorer outcomes from the virus. There is still so much that is unknown about this virus.

The U.S. Centers for Disease Control notes that having a disability alone is not necessarily related to being at higher risk for getting COVID-19, or contracting a severe illness because of it. The information on the website correlates with the above: If a person with disabilities has a chronic underlying health condition, they could get pretty sickened by Covid-19. That's true of all people, and it remains unclear on whether a person with disabilities who has an underlying health condition is at any higher risk than a person without disabilities who has an underlying health condition.

What's tragically true is that adults with disabilities living in group homes in New York have been severely impacted, The New York Times reported back in April. An article I read yesterday noted that since March, 2160 residents in New York had gotten the virus and 353 had died—a rate of more than 15 percent.

Several weeks ago, I had a shocker of a conversation with Max's longtime neurologist. He informed me that if Max got COVID-19, he could have issues with his pulmonary function because of his motor issues. Basically, this virus is a bad thing for lungs. At best, the infection causes a cough and shortness of breath. But if it goes deep into the lungs, it can lead to pneumonia and acute respiratory distress syndrome. The doctor acknowledged that while he did not have firsthand knowledge of Max's lungs, he said that his CP could impact his ability to move lung secretions and maintain good breathing. He advised us to stay at home, which we were already doing, and in particular to not let Max go to any public gatherings in the upcoming months. And if school was in session in the fall? Well, he wouldn't recommend sending him.

I was so freaked out, it literally kept me up night after night. So I did what I usually do in these situations: I sought more information. I found out from someone I know who has done much advocacy work for cerebral palsy that the person's network of doctors was not putting patients on lockdown unless they had an underlying lung issue, a trach tube or had been hospitalized for pneumonia.

Then I hit up a wise, warm and caring doctor I know who has specialized in treating children and adults with CP for decades. He noted that he treated a woman in her forties with CP who's been fine, while her 40-year-old brother in perfectly good health spent 18 days on a ventilator before recovering. To date, he said, he had not seen any data to suggest that cerebral palsy in and of itself increased the risk of infection or what he called a "severe clinical course." However, if someone with CP has had pneumonia or pulmonary problems that had led to scarring and decreased lung capacity, those patients would be at higher risk—aka secondary issues related to cerebral palsy that occurred over time.

He noted that one of the greatest risks came from increased age, and that Max's youth was probably the strongest thing in his favor. He recommended we stay put at home, at least until July, and reassess then. He also felt it was too early to make judgments related to the fall.

I felt somewhat relieved, although we are sure not letting our 'rona guard down. Max is staying at home this summer. And for the indefinite future, our family is not venturing out to stores, salons, or basically any indoor public space.

What have you heard from the doctors and specialists in your world?

Monday, June 8, 2020

The adopted boy with autism whose parents gave him up is better off without them

Image: YouTube

The Internet continues to blow up over the fact that YouTubers Myka and James Stauffer gave up the little boy from China they'd adopted who had autism, aka "rehomed" him as news outlets have been saying (a particularly awful euphemism). As the parent of a child with disabilities who also suffered a stroke, I felt all the feels watching their announcement on the YouTube video they released. There's been a lot of fury about what these parents have done, and less talk about how it will impact the child. And I believe it's a good thing for him.

"Once Huxley came home, there were a lot more special needs that we weren't aware of, and that we were not told," James said about the couple's adoption of Huxley n October 2017 when he was two and a half years old. Myka had documented the fact that the couple knew their son had a brain cyst, and that it soon became clear he had developmental delays (a well-documented occurrence in babies adopted from Chinese orphanages). Eventually they learned he'd suffered a stroke in utero. Then he was diagnosed with autism. The Stauffers tried various therapies and, in the last year, more "intense" therapy" as James says in the video.

What exactly happened is unclear. Myka says that "after multiple assessments after multiple evaluations numerous medical professionals have felt that he needed a different fit and that his medical needs...he needed more." They said they couldn't get into detail to protect Huxley's privacy, and that the child had been spending time with various people to find his "perfect fit" and his "now, new forever family." He'd been placed with his "perfect match," a person with medical professional training. It's been reported that authorities are investigating the welfare of Huxley (the police have confirmed he is "not missing") and whether the couple went through the proper channels to find him a new home.

Some fans posted sympathetic comments; other people were critical, calling their decision selfish and unethical, especially because the couple had used his story and images for profit. More than 150,000 people signed a change.org petition demanding that the Stauffers remove monetized content featuring Huxley.

I don't know Myka and James Stauffer—not from their YouTube life or in real life. But what I do know is this: If you are not up to raising a child with special needs, and that child gets a new home with a parent or two parents who are willing and capable of caring for him and who do want him, then that is what's best for the child. Perhaps not in the short term; I surely hope Huxley did not suffer trauma from the transition, especially since change can be particularly hard for a child with autism. But in the long run, yes.

As most any parent of a child with disabilities can tell you, raising a child with special needs can involve physically hard work and a whole lot of heart work, too. But they are your child, biological or adopted. If this couple were not up to handling Huxley's needs or the way those needs impacted their family (in a now-deleted comment under the video, Myka noted that "multiple scary things happened inside the home towards our other children") then Huxley is better off without them. I say this with no malice—I mean it.

As mind-boggling as it is to think that these parents gave up on their child, it is just as mind-boggling and awful to think of a child with special needs being raised by parents who could not handle his needs.

Parents of kids with disabilities are not cut out of any special cloth. We are not born with more patience or more tolerance or more compassion or any of that. God does not only give special children to special people, despite the fact that strangers who tell us that seem to firmly believe it. And Myka and James Stauffer are proof of the flesh and blood that parents are made of.

I hope beyond hope that this story does not send the wrong message about adopted children who may prove to be more than their parents can handle or scare people off adoption, period. There are so many resources available for raising children with special needs, including doctors, therapists and the communal support and connections many of us have found online. Every year, people knowingly adopt children with medical and developmental conditions—check out the amazing stories on RainbowKids—though there are thousands of children with special needs still in need of homes.

We can sit here, feeling sad and sickened and angry, and judge these parents till doomsday (which, come to think of it, has definitely felt like it's arrived in the last few months). But it all comes down to what's best for an adorable little boy with autism named Huxley. And Myka and James Stauffer were not best for him. And I believe that child will be better off for it.

Friday, June 5, 2020

The Disability Blogger Weekend Link-up is ready for you

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Thursday, June 4, 2020

What do you do with the mad that you feel?

What do you do with the mad that you feel
When you feel so mad you could bite?
When the whole world seems oh, so wrong
And nothing you do seems very right?

Those are Mr. Rogers' words, from a song he wrote back in 1968. The lyrics keep popping into my mind. I am mad about the death of George Floyd at the hands of the very people whose job it is to protect citizens. I am mad that incidents of brutality against black people have cropped up again and again and again and every single time it seems like it should be a turning point given the outrage and outcries that ensue and then, another death. Ahmaud Arbery was executed by white people two months before George Floyd was.

There is a tidal wave of sadness and grief and fury coursing through our country right now, along with white guilt for not doing enough to combat racism in our communities.

What do you do with the mad that you feel? What do you do when the whole world seems wrong?

You do what you can in your world.

We can confront the uncomfortable feelings we may have about white privilege.

We can talk with our children about that and our experiences observing racism.

We can read them books to help open their minds. The Colors of Us, which takes a positive look at different skin colors, is one of Ben's favorites.

We can use quotes and posts as conversation starters, like this one from Michelle Obama:

Like so many of you, I’m pained by these recent tragedies. And I’m exhausted by a heartbreak that never seems to stop. Right now it’s George, Breonna, and Ahmaud. Before that it was Eric, Sandra, and Michael. It just goes on, and on, and on. Race and racism is a reality that so many of us grow up learning to just deal with. But if we ever hope to move past it, it can’t just be on people of color to deal with it. It’s up to all of us—Black, white, everyone—no matter how well-meaning we think we might be, to do the honest, uncomfortable work of rooting it out. It starts with self-examination and listening to those whose lives are different from our own. It ends with justice, compassion, and empathy that manifests in our lives and on our streets. I pray we all have the strength for that journey, just as I pray for the souls and the families of those who were taken from us. Artwork: @nikkolas_smith
A post shared by Michelle Obama (@michelleobama) on
And this classic from Nelson Mandela:
And this one from pastor Carlos A. Rodriguez:
We can organize or participate in communal efforts even if we don't feel comfortable going to public protests because of the coronavirus. Our town organized a vigil this week for George Floyd; we lit candles and stood outside our homes at 8:15 p.m. 

We can sign petitions demanding policy reforms to address the fact that black people have been disproportionately affected by the pandemic.

We can honor the wishes of Terrence Floyd, George's brother—who spoke out against violence at a prayer vigil, said "let's do this another way" and implored people to get out there and vote—by pitching in with voter registration drives in our areas.

We can make a dedicated effort to support local black businesses.

We can donate to national funds with a mission of racial justice like the NAACP Legal Defense and Educational Fund and Color of Change.

We can do more. We can do better. We can use the mad to do good and make good.

Artwork: @tobehonestnl

Tuesday, June 2, 2020

One way to help keep your family safe from the coronavirus: Make the ask

I am, by nature, someone who loves nothing more than getting stuff done. And if I'm the only person who can do it, no problem—I'll make it happen. Seventeen years ago, though, when I had Max, I had to come to terms with the fact that I needed to rely on other people to help Max: doctors, specialists and especially, therapists.

Over the years, I became an expert at asking for what Max needed, whether it was extra assistance at school, devices and equipment, getting him into a program, accommodations at an event or basically, anything that would enable him. I've basically become an expert at making asks, as I'm sure many of you have.

Cut to this past weekend, when we were in Cape May, NJ. There have been relatively few cases of coronavirus there, and not many people were wearing masks. We were, except on the beach where it was uncrowded and it was easy to seriously social distance, breathe in the ocean air and forget for just a little while that we are in the midst of a pandemic.

In our area, stores and restaurants are doing curbside pickup but a lot of places at the shore were having customers walk into store to pick up things. At least staffers were in masks and gloves. I called Britton's Bakery, which has the best apple fritters and cinnamon buns. I explained that we weren't going into stores. The girl on the phone apologized for the lack of curbside. I asked if I paid by credit card ahead of time and stood by the back door and waved, would she bring a bag out and leave it on a chair?


And that's how it went. Sabrina had been wanting a beach cruiser bike, and we found an old one for sale on a local Facebook buy and sell group; the guy left it curbside for Sabrina to test out, we paid by Venmo. Then I needed steel wool to get rid of the rust on the handlebars. I called a local hardware store; if I paid for it over the phone, would they walk it out to me? Yep. When we ordered some sandwiches, a staffer agreed to place the bag in our trunk.

Cases of coronavirus are going down but obviously, social distancing and being cautious is everything, especially if you have children who are at high-risk for complications. I continue to order groceries online. Our state is opening up all stores on June 15, but I'm not planning to take our children to them anytime in the near future. Hair salons are opening June 22, assuming cases continue to decline; not going there, either. This means I'm going to have to actually use the hair cutting shears I got on Amazon on the boys—still getting up the nerve!

And I'm going to keep right on making asks. I hope you're cool doing the same. With protests happening, it seems like there's going to be a spike in the coronavirus. And as summer evolves, I'm sure people are going to get more lax about social distancing and wearing masks. It's up to us to do whatever is within our power to keep our families safe. As parents of children with disabilities, we sure know a thing or two about doing what we can when situations feel out of control.

Friday, May 29, 2020

The Disability Blogger Weekend Link-up is here

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

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Wednesday, May 27, 2020

Personal protective equipment for children and teens with disabilities

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

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

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

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

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

Weird. New. World.

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