Friday, January 22, 2021

The Disability Blogger Weekend Link-up: Inaugural 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: Love That Max: Inaugural poet Amanda Gorman and the speech challenges she's overcome

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, January 21, 2021

Inaugural poet Amanda Gorman and the speech challenges she's overcome

Yesterday's inauguration ceremony was beautiful, meaningful and cathartic. It gave me hope I haven't felt in forever. One of the most memorable parts was 22-year-old poet Amanda Gorman reading her poem "The Hill We Climb." Her words were powerful; she was amazingly poised and eloquent. Later in the day, I found out that she had grown up with speech and auditory processing issues when a friend shared a piece from Understood. Then I read up on her more. 

As a kid, Amanda had trouble articulating certain sounds. "My challenges were always, just for me, something that was reality," she said. "But I knew I had strengths, too, with words and writing." She told NPR that the letter "r" was especially tough for her, and she learned to sidestep certain phrases. "I'd want to say 'Girls can change the world' but I cannot say so many letters in that statement, so I'd say things like 'Young women can shape the globe.'"

She worked hard to perfect her sounds and pronunciation. "I don't look at my disability as a weakness," she told the L.A. Times. "It's made me the performer that I am and the storyteller that I strive to be." In 2014, she was named the Los Angeles Youth Poet Laureate. In 2015, she published her first book of poetry, The One For Whom Food Is Not Enough. Yesterday, she made history as the youngest known inaugural poet un U.S. history.

I watched Amanda read the poem again last night. I can't say I was astounded—as the mom of a very determined person with disabilities, I've seen how much can be overcome with sheer will. I know full well the slippery slope of praising someone with disabilities who's just living their life and doing their best. Still, I was heartened to know she was a member of my boy's club. And I felt glad that she's been vocal about her struggles, in the name of helping people see the ability in disability. 

For there is always light,

if only we're brave enough to see it 

if only we're brave enough to see it

Tuesday, January 19, 2021

What takes your mind off everything

My list of anxieties about life right now is long. My list of stuff that truly takes my minds off life is far shorter, but it does the job. This does not include the two-pound jar of Nutella sitting in our cupboard, which is in a category all its own. 

I can fully lose myself in work, and I'm grateful for the creative outlet and sense of purpose and accomplishment.

Here and there, I take lunchtime walks with Dave and they're cathartic. (Last night I read about people doing "fake commutes" involving long walks before breakfast.)  

Immersive activities in which I can't constantly look at my phone, like baking or doing a project with Ben, distract me from life. 

So do drives alone, especially at night when there's calm and quiet.

Organizing anything and everything: a seriously satisfying diversion. I literally just close the door to the areas where neatness is impossible like our so-called dining room, which is now Dave's office/man cave.

Playing piano takes me away; I recently tried it again after not touching ours for the better part of a decade. I'm rusty and plinking away, but it feels good.

And I can always escape to another world through a book or TV series—in recent months we've finished The Queen's Gambit (outstanding), The Undoing (pretty good) and Peaky Blinders (absolutely positively addictive and I've been up till 2:00 a.m. lately because of it). 

The best antidote is laughter, just as its always been. Ben and Max have taken to hanging out in the basement together and sometimes the sound of their giggles drifts upstairs and lifts me. Sabrina and I laugh over Ben's maneuvering and mannerisms. 

Friday, I walked downstairs and found Max enjoying a class dance party (he's still doing virtual schooling). As he did the moves to "Watch Me" Max laughed gleefully and I did, too. In that moment, he was living his best life. And I remembered to, as well. 


Friday, January 15, 2021

The Disability Blogger Weekend Link-up is here for you

What to do if you're new  

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

Like this: Love That Max: Barbie is not broken

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, January 14, 2021

20 years of for better, for worse, and everything in between

Today is twenty years since our "for better" began.

Twenty years of adventures of all kinds. 

We were so excited to be parents, one of life's greatest adventures. 

And then, unexpectedly, "for worse" was upon us. I cried for days, weeks, months. You'd say, "Honey, look at him, he's beautiful." And Max was

You were the warmest, sweetest, most big-hearted guy I'd ever met and I always knew you'd be an amazing dad. You turned out to be Superdad, there to support Max, and Super-partner, there to support me. 

All new parents learn how to be a team. We quickly learned how to be Max's medical team. I researched treatments, found good specialists and therapists, and exercised Max's little muscles to get them to loosen up.  

You'd play with him lots and often feed him (still true). You never hesitated to change his clothes, change his diapers, give him a bath, dash out in the middle of the night for medicine, do whatever. I'd get so distraught that Max couldn't retain food and anxious about what the future held for a child who couldn't eat or drink OK. You'd hold cups and spoons to his mouth with a smile.

We juggled the doctor appointments and therapies. Sometimes I'd take him to physical therapy at the hospital and you'd take him Thursday nights to another physical therapist or lie with him in the glass hyperbaric oxygen treatment chamber that was supposed to reinvigorate his brain, and we'd joke about how extra-smart it was going to make you. Saturday mornings were reserved for hippotherapy at Special Strides. Sunday mornings were the cranisocral therapist, followed by lunch. We'd comfort each other when we saw other babies doing their usual baby things.

Our bond was strengthened by our determination to do anything and everything within our powers for this boy. 

He had your good-natured personality. And good hair!

We've always shared a love of travel, and little getaways lifted our spirits. Remember when Max ate his body weight in paté at that mountain resort?! 

When Sabrina came along, you were in awe. She had you wrapped around her little finger from day one.

Once again, you proved to be an indefatigable dad, except for when you'd conk out on the couch. (File under: Some things never change, ha ha ha).

We've always found the fun. 

At Disney World...

On Amelia Island...

At our Vermont farm stay...

Trying Segways...

At our favorite Jersey Shore beach...

On a Disney Cruise...

In Rhode Island...

In Jamaica...

On our babymoon in The Poconos, before our next great adventure began.
Then came Ben. And once again, your love for our children made me fall in love with you all over again. 

We've shared moments of pride only the two of us can fully appreciate, like when Max had his bar mitzvah. 

You make just hanging out on a couch fun.

Celebrating Sabrina's bat mitzvah

I don't know of any dad more devoted than you. There is nothing you won't do to keep our children  healthy, occupied, entertained and content. How many times did you visit our local fire station with Max when he became obsessed with firefighters? How many times did you drive through the car wash when he was into them? How often have you and Max headed out for ice-cream at night? Countless.

I still can't believe you two walked across The Brooklyn Bridge.

Max's elementary school graduation. Much of his progress is because of
your encouragement, attention, love and care. 

You are his best friend.

You are the most fun playmate any of our children has.

You are always there to support them, in every which way.

Our trips may have stopped this past year because of the pandemic. But we have made so many incredible memories together, and there will be many more to come.

There will be more boys' getaways, too. Maybe one of these years, the two of us will even manage to escape.

Probably this won't happen again. 

Teaching Sabrina to drive this spring: A whole other adventure. If anyone has the patience for that, it's you. 

You know me better than anyone, you nurture me in every which way, and you've kept me sane throughout the pandemic. Even when we bicker, you are determined to make up because you are such the peacemaker. I will never forget watching you traipse up our attic stairs to deliver breakfast, lunch and sometimes even dinner as I work. Maybe we haven't had date nights lately, but just sitting with you, talking and watching TV never gets old. We don't, either, right? RIGHT?! 

We've been through so much, and we've always been there for each other. Here's to our next twenty years together. I love you. 

Wednesday, January 13, 2021

Barbie is not broken

Ben's going through a Barbie phase. Mostly, he owns inherited Barbies and Kens who are clothes-less, making our living room look like a toy nudie camp. Ben plays with them pretty actively—as in, he propels them like footballs—and they are missing limbs. I've done my best to reattach them but the arm of the latest Barbie casualty is nowhere to be found.

As I was decluttering the living room the other night, I decided that I was going to toss that Barbie. Ben has a bunch and I wasn't going to wait around for the AWOL arm to turn up. Into the trash she went. (Fun fact: Barbie is not recyclable, I googled.)

As I lay in bed that night, something was bugging me about Barbie in the trash. Why had I decided that she needed to be tossed just because she didn't have an arm? Ben didn't have any issues with her, and she could be a teaching moment. As the parent of a disabled child, I know full well that awesome comes in all varieties, shapes and sizes. And there's been growing awareness of that in our society. For years, I've followed Jen Lee Reeves' writing about her daughter, Jordan, whose left arm stops after the humerus. Jen's blog and the nonprofit the pair started are both named Born Just Right, and two years ago Jordan wrote a book by the same name. I've seen the documentary on The Lucky Fin Project, started by the mom of a daughter with a stunted right hand, on YouTube

These days, there are a couple of Barbies with prosthetic legs. One mom who founded the nonprofit A Doll Like Me makes limb-different dolls, among other kinds. 

It was just so wrong to throw out limb-different Barbie.

I got out of bed, removed her from the trash and put her back in the doll basket. Last weekend, when Ben was playing with her, I talked a bit about her arms.

Me: "This Barbie has one arm."
Ben: "Yes, I losted the arm."
Me: "Some people have one arm."
Ben: "They losted their arm?"
Me: "Sometimes they were born with one arm. Or they were born with part of one arm. Sometimes people have one leg or part of one leg, too." 

At this point, I googled "limb different" and showed him some photos.

Me: "See? There are lots of types of bodies."
Ben: "Can I lose my arm?"
Me: "Some of these people were born this way. It is called being limb-different. A limb is your arm or leg."
Ben: [Ponders the photos.]
Me:  "Those kids can do lots of stuff that you can! They can get dressed by themselves, play with toys, hold ice-creams and ride bikes. They do things their way, like Max does."
Ben: "Can I have chocolate milk?"

And so that discussion was done for then, but it will continue. Limb-different Barbie remains part of the gang, tossed around like any other doll and equally adored. 

Monday, January 11, 2021

Don't curse me out for asking you to wear a mask

I had a return to make to a big box store the other day and there was no getting around going. So I put on a K95, which we reserve for the rare times we go a public place, and headed in. The return area was located right near the big open sliding doors, which made me feel somewhat better but still, I was wary. Right before I got on line, I noticed that the woman in front of me wasn't wearing a mask. 

"Excuse me, we're indoors and you should be wearing a mask," I said.

She glared at me. "It must have fallen off," she muttered, and turned to walk out the door.  

"I appreciate it, one of my kids is high risk for this virus," I said.

"Go [eff] yourself," she responded, and walked out. A minute later, she returned wearing a mask and took her spot again.

Yet another incident of mask rage, on both ends. I take full responsibility for not sounding entirely calm when I asked—because I get anxious when I am in public places, and because my nerves were already frayed from all the chaos in our capitol last week. And for sure, there are people who can't wear masks because of sensory issues. But I sure didn't deserve to be cursed out. It made me especially glad that we're mainly staying home these days.

It's a law in New Jersey, as it currently is in 37 other states, that face coverings are required in indoor spaces accessible to the public. It's too bad when customers have to be the ones to speak up. Last night, when Sabrina wanted Mexican food, we called in an order to a chain she loves and I waited outside for someone to walk it to me. As I stood at the large glass window, I watched a couple of people in the restaurants pull down their masks to talk on the phone. The store manager was standing right there. Not a peep.

For many months, masks were the only recourse we had for preventing Covid-19. The vaccine will be coming to the masses in the next few months, and it will help prevent serious illness but masks remain the key way of protecting yourself and preventing the spread of this virus. And we're going to be wearing masks for a long time to come, because even if you get the vaccine it's still possible to transmit the virus (here's a good piece on that in The New York Times and one on the website FiveThreeEight).

For some, shunning masks continues to be a political statement. For others, they're a screw-you statement. Yet others somehow still believe Covid-19 is not a big deal. #SIGH. Of course, anyone who refuses to wear a mask isn't just putting themselves at risk—they're putting the most vulnerable people in our communities at risk. That includes my Max. And as his Mama Bear, it is really, really hard for me to stay silent when people don't wear masks in public places. 

It is not my intent to be the mask police. I'm not stomping on anyone's civil liberties, given that it's an actual law to wear a mask. I am just a person who cares about my family's well-being and humanity's well-being. If I saw a crime being committed, if I saw someone hurting someone else or being hurt, if I saw someone about to get into an accident, I'd speak up. That's what citizens do: If you see something, you say something. 

One reminder I had following this incident, though, is the need to be as neutral-sounding as possible about requests to wear a mask. People are generally on edge. While I mentioned having a child with special needs to explain why I was speaking up, perhaps that wasn't necessary and only added fuel to the fire. But respect goes both ways. If people are asked to wear mask it just seems like they shouldn't get all indignant, although that's polyannaish to expect and some anti-makers are going to be. 

Deep breath. Deep breath. Deep breath.

The cat face mask (because I'll bet you're wondering) can be bought here

Friday, January 8, 2021

The Disability Blogger Weekend Link-up: peace and good posts

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: Love That Max: One of the best feelings any parent can have

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, January 7, 2021

One of the best feelings any parent can have

Yesterday Max did his workshop program on our kitchen table, the one his school put together to help him gain job skills while he's learning at home. This time the task was to place plastic spoons, forks and straws into 10 bins. It would help him practice organizing, sorting and fine-motor skills. Only he demonstrated something even more amazing along the way.

I came down from my office in the attic to help Max set up and get going. He grasped the concept but the cutlery, not so much. The plastic straws proved even harder for him to grab.  

After he'd struggled through two bins' worth of work, he walked over to the silverware drawer and grabbed some metal spoons. Our sitter was perplexed, but I knew instantly what was going on: Max had realized that picking up the weighted metal spoons would be easier than the plastic ones. 

Excitement, happiness and relief flooded through me. Knowing that your child can look out for themselves—and figure out how to enable themselves—is huge. Maybe it was just one little task. But in that one moment, I was reminded that Max has those abilities. And that his smarts and common sense will carry him through life, even when Dave and I won't be there for him. 

Of course, I know full well that Max is bright and competent. But as his longtime helper/coach/cheerleader, it can be difficult to not doubt Max's independence, as much as I so badly want him to have it. So I am always grateful and relieved by these reminders when they crop up. Like the way Max insists on going to yoga sessions with my sister-in-law, because he knows they relax him. Or the time a few months ago when Max insisted on walking home alone from a visit to the fire station or when he took it upon himself to cancel a therapy session, because he preferred to go to the park (he still occasionally does that). 

Max continued on with his bin sorting. He ran out of metal spoons and stuck with the plastic ones, sometimes clutching them, the forks or the straws so tightly that I thought they would break. But he persevered and finished all 10 bins. (Determination: another awesome life skill.)

Few thoughts are as unsettling and utterly disturbing as the one that your child with disabilities will someday go on living without you. And few thoughts are as heartening and hope-filled as this: He will be OK.

Tuesday, January 5, 2021

Overheard during our pandemic winter staycation

"I hate winter! Why did you move here?" (Max)

"MOMMMMMMY I got the white gumball and it's spicy!" (Ben)

"MOMMMMMMY can you make me a charcuterie board for dinner? I'd like salami, some good cheese, grapes, those little pickles, pecans and anything else that's good." (Sabrina)

"Honey, I need razor blades. I sent you about twenty emails about which ones!" (Dave)

"Can you ask Alexa when the coronavirus is going to be over?" (Ben)

"I would just like a few minutes to read my book in peace. That is all I want! Is that too much to ask?!" (Me)

"We live in a shack!!! Ugh!!! I need to get out of here!!!" (Sabrina)

"Can I have ten more minutes? Please? Then I'll turn off the TV!" (Ben)

"Can I have five more minutes? Then I'll turn off the TV!" (Ben)

"Can I have two more minutes?" (Ben)

"Can I have one more minute?" (Ben)


"MOMMMMMMY!!! My clothes smell a little funny! Here, smell this shirt! Don't you think it smells funny?!" (Sabrina)

"Sorry, I don't know where your phone is/plug is/Cat Noir doll is/jacket is/sweatshirt is/left shoe is! Wherever you left it!" (Me)

"Who is God?" (Ben)

"Can you Zoom with God?" (Ben)

"It's better in Los Angeles!" (Max)

"Honey, I need those peanut butter bites and not the double peanut butter ones because they make my stomach hurt, just the regular ones. Can you order like 20?" (Dave)

"Wait, what did you want me to do? Can you send me a text about it?" (Dave)

"Can I order DoorDash?" (Sabrina, repeat 237 times)

"MOMMMMMMY I need a big white drawing pad. No, that one is not good quality. I need it now can you go get one? There's curbside pickup! The store closes in 15 minutes! You still have 15 minutes!" (Sabrina)

"It's not 6:00, it's 3:00! That's Los Angeles time!" (Max)

"What do you mean the Barbie show is not good for my brain? I LIKE IT. It is GOOD." (Ben)

"I WOULD JUST LIKE A FEW MINUTES TO READ MY BOOK!!!!!!!!!!!!!!!!!!!!!!!!!" (Me)

"MOMMMMMMY we don't have any good snacks!" (Ben)

"MOMMMMMMY we don't have any good snacks!" (Sabrina)


Saturday, January 2, 2021

The Disability Blogger Weekend Link-up: Welcome 2021 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: Love That Max: The five best words

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.

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