Friday, October 15, 2021

The Disability Blogger Weekend Link-up: post it!


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: Someone's child has a speech delay—do you say something? 

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Thursday, October 14, 2021

Someone's child has a speech delay—do you say something?

An adorable little girl I know who's almost 3 years old has a very limited vocabulary—just a few words, and no sentences. She loves singing the ABC song, though she doesn't clearly articulate letters. Her comprehension is good, and she can communicate with nods and gestures. 

This has weighed on my mind. Should I say something? What could I even say? I'm not that close with the parents. Of course, this kid may already be getting therapy; a pediatrician would be well aware of the issues. But as a parent who 18 years' worth of experience with speech delays, I have ached to speak up.

The stigma surrounding developmental delays has eased up in recent years. Still, some parents are hesitant to get their kid therapy. Sometimes they're in denial. Perhaps they figure their child will grow out of it. It's possible they don't want labels imposed on their child. All of this can make the topic so difficult to broach and talk about.

It shouldn't be that way—delays and disabilities are nothing to be ashamed of. But here we are in 2021, and that's still a thing. If this parent had hesitations, I wanted to gently encourage her to get her child help and connect her with a therapist I trusted for an evaluation. I wanted to share my wisdom. At the heart of it all, I wanted to help her child. 

If you see something, say something?

But who am I to say something?

But if I don't say something, am I doing a child an injustice? 

Years ago, I held an 11-month-old in my arms and my Spidey senses kicked in. The tot had low muscle tone and didn't make eye contact. I mentioned to a mutual friend that these could be signs of autism, even as I doubted myself: What if that baby was just very mellow? My friend hadn't noticed, and I never said anything. Months later, the child was diagnosed with autism and started getting services, and I felt guilty for not having said anything. 

And here I was, again.  

Then one day, as the mom and I were chatting, the little girl walked over to us, said "all" for "ball" and her mom handed one to her.

"When Max was her age, he couldn't say that," I mentioned. 

She nodded.

"Speech therapy really helped him come along!" I said. "Max has had the same therapist since he was a little guy."

She nodded again.

Silence.  

She didn't want to go there, and that was fine.

Speaking from personal experience had been a way to start the conversation. It opened the door, should she choose to enter. Maybe she still will. 

Saturday, October 9, 2021

The Disability Blogger Weekend Link-up is excited to have 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: The thing about the red nail polish

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Friday, October 1, 2021

Get ready, it's the Disability Blogger Weekend Link-up


What to do if you're new  

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Thursday, September 30, 2021

The thing about the red nail polish


Max came home from a morning out with Dave the other day. They'd gone to get pedicures; let's just say their toes needed TLC. Max had his nails done, too. Red, his favorite color. 

"Wow, wow, wow, Max!" I said.  

Max beamed. 

I wasn't even aware that boys were into wearing nail polish these days until Ben wanted some a year or so ago and Sabrina informed me that it was a thing. I do not have nail polish in my genes; my mom rarely polished her nails growing up. The first time (and I think maybe the only one) she ever got a manicure was for my wedding, when I insisted. Me, I love a good pedi, but I do way too many chores and way too much typing to justify a manicure since my nails inevitably chip within a couple of days.  

Max held out both hands for me to admire his nails. 

When Max was little, I was acutely aware of people staring at him. When we were out, I'd watch people watching him and it would eat me up alive. Because I thought it was rude, because I yearned for others to accept him for who he was and because I was still coming to terms with having a child who was seemingly so different from my friends' children. 

As Max got older, I more or less quit caring about what people thought. I also stopped seeing him as "different" and accepted him for who he was. Max didn't care: He wasn't aware of the looks and besides, he didn't think anything was wrong with himself. I felt exactly the same. If people could not see the whole of who he was—a bright-eyed, super-sunny, charming, good-humored, overall adorable boy with his own way of walking and talking—well, that was their problem, and their loss.

I still find it's rude when people gawk, but it no longer pains me. The red nails made me think of all this. I would have worried, when Max was younger, that the nails would make him stand out more. Years ago when he was in his everything-purple phase, I spotted purple Crocs at Target and decided not to get them because I so badly wanted him to fit in. It still haunts me, to this day. 

The other morning, though, all I could see was a young man standing in front of me with the biggest smile on his face and gloriously red nails.

"They look amazing," I told him. And I meant it.

Friday, September 24, 2021

The Disability Blogger Weekend Link-up


What to do if you're new  

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Like this: Is it OK to leave your teen with disabilities home alone? 

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Friday, September 17, 2021

The Disability Blogger Weekend Link-up: here!


What to do if you're new  

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Thursday, September 16, 2021

When is it OK to leave your teen with disabilities home alone?

Some days, Max is more responsible than I am. He remembers that he needs to take his meds. He knows when his music therapy class is scheduled and lets us know. He asked the other day why his teacher hadn't yet given him any homework.

In similarly awesome news, Max's independence has really taken off in the last year. He is now walking places on his own (he has an AppleWatch to stay connected), grabbing his own drinks of water and regularly reminding us of his plans to relocate to L.A. sooner rather than later. 

So it would seem at odds that I have qualms about leaving him on his own at home for periods of time. But I do. 

This weekend, Sabrina and Ben wanted to hit the drive-thru Starbucks. That is what counts for adventure these days, and I am always in the mood for a decaf mocha frappe. Max preferred to hang in his Max Cave, aka our basement. 

Dave was away, and I hesitated to leave Max alone.

Sabrina tried to cajole him into coming but, nope. 

While there are no developmental guidebooks for children with disabilities, given that every child develops on their own timeline and in their own way, these days I struggle with the lack of a handbook for raising a young adult with disabilities. It is a tough balance between letting Max have his freedom, making sure he's safe, and learning to let go. 

The Starbucks is 15 minutes away, but with ordering and coming home we'd be gone for about 45 minutes, maybe an hour with traffic. I haven't yet left Max alone for that length of time. I decided it would be OK, although some worst-case scenarios ran through my head as I drove off. I had to work through them. 

In case of emergency, would Max be able to get out of the basement fast? 

Yes, he is capable of getting up the stairs and opening the front door. He would know to text us, and he knows to dial 911.

If someone rang the doorbell, would Max know not to open it to a stranger?

Yup. We've had that conversation, he understands.

If he needed to use the bathroom, would he be OK?

Shoot, should have checked before I left, but he can handle it to some extent.

What if he has a seizure?

For that, I had no answer. Max's seizures are under control with meds. And in the end, I have to trust in them, too. 

Even if Max's life skills and physical skills are not at an 18-year-old level, he has maturity and smarts on his side. In the end, I trusted in him. And in the fact that because he can be a total couch potato, the time would zoom by and he wouldn't even wonder where we were.  

Sure enough, we went, we Ventied, we returned. Max was exactly where I'd left him, watching iCarly. 

"Did you like Starbucks?" he asked.

"I did!" he said.

"They have Starbucks in Los Angeles," he helpfully pointed out.

To be continued, as always.

Saturday, September 11, 2021

In memory of Melissa Renee Vincent: Say her name

I did not know her. But I'd seen her face on "Missing" flyers everywhere around Hoboken, NJ, in the weeks following 9/11 where we both lived and it haunted me. She seemed like someone I could have been friends with. Back in 2013, I figured out who she was and vowed to always remember her.

Melissa Renee Vincent.  

Today marks twenty years since that terrible day and it is still hard to process the magnitude of what occurred: 2,997 lives taken, countless hearts forever hollowed. I did not personally know anyone who perished that day. So I do my part to keep her memory alive, this one beautiful person from the hometown of our twenties. 

Melissa is not another tragic number. She was like you, she was like me. From the tributes that I've read and comments people have left here, I know that she grew up in a small town in Western New York and attended college at SUNY Oswego. She liked baseball games, movies, Broadway shows and singing. She was known for being kind and generous. She had a good job, good friends and a family who adored her. After I first wrote about Melissa, people mentioned they had seen her father on CNN pleading for leads about her whereabouts.

She would have turned 48 in October. 

This year I've donated to the Community Foodbank of NJ, a nonprofit in the state we've both lived in, to honor her memory. This morning, I'm listening to the names being read at the remembrance ceremony,  the memories, the tributes, the love for 2,977 people with 2,977 stories.  I will be there for Melissa's name, toward the end.

Melissa Renee Vincent, I will never forget. 

Thursday, September 9, 2021

Just the usual back-to-school chaos. Yay!

Last September, there was no actual back to school—Max did virtual schooling until March, when he was fully vaccinated. So BTS this year, with all its do-they-have-shoes-that-fit-did-I-fill-out-all-the-forms-need-to-reload-that-Covid-testing-app-OMG-forgot-to-pack-backup-clothes-what-kind of-cool-snacks-should-I-give-them hustle and bustle was kinda sorta a relief.

I'm more nervous than I was last spring because of the variants and how contagious they are, but grateful that the vaccine significantly reduces the risk of the worst side effects. I'm also grateful that Max puts up with wearing a mask. Also: I have worried so much this past year about all the things that I've grown kinda numb to it.

When Max came home from school and I asked how the day went, he gave a typical teen answer: "OK." 


"Just OK?" I asked.

"It's not Los Angeles," said he, the place where he'd rather be. 

At least he had the hat. 

Wishing all of your children and excellent start to their school year and much sanity to you!

Friday, September 3, 2021

The Disability Blogger Weekend Link-up is ready for Labor Day


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 next phase of his life

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Tuesday, August 31, 2021

The people who see our children for who they are


This is a guest post by Jane Kim, a writer and mom to a 9-year-old with autism. She works in the field of immigration, and lives with her family in the Philadelphia suburbs. Find Jane on Twitter@JKimRites.

“What’s missing?” 

The speech therapist looked at my son, T, expectantly. She had placed a few household items in front of him, gave him time to look at them, blindfolded him, and then removed two of the items and his blindfold. This activity was meant to build vocabulary and boost memory. For much of T’s early life, this was a typical afternoon. He was diagnosed with Autism Spectrum Disorder (ASD) when he was around three years old, and a cadre of therapists were an everyday part of our lives.  

As a parent, when your child has ASD, you are trained to notice what’s amiss. He’s not imitating others enough. He’s not participating in symbolic play. He should be more engaged with children at preschool/in the neighborhood/on playdates.



This information is helpful to therapists and clinicians who structure programs and recommendations based on your child’s current abilities. However, it’s not helpful when it becomes your primary focus. As T missed milestones or met them shakily, I grew hyper-vigilant. As he was potty training, I noticed when his pants were wet more than when they were not. When he was learning to get dressed, I promptly commented his shorts were on backwards. Regretfully, I often told him before he could notice it himself, depriving him of the opportunity to learn and gaining self-reliance. 

It was a stressful few years, and downtime was nonexistent. When you’re preoccupied with what’s missing in someone else’s life, ironically, you fail to notice what’s missing in your own. My life had lost all balance and was overrun by to-do lists and anxiety. As T grew older, things got a bit easier. He started attending kindergarten full-time, developed a love of books and music and was riding his scooter at dangerous speeds around the neighborhood. I started sporadically seeing friends again and joined a tennis league. It was the first time in a while I had started feeling like myself again, after my marriage ended. 

When I met Mark, I was heading out of the weeds, but still primarily focused on T’s IEP goals and how to integrate him more socially into the classroom. At their first meeting, T dragged him upstairs by the hand to show him his bedroom within seconds of meeting him. When they didn’t come down for 5 minutes, I knew it was a good sign. 

At dinner, I jokingly apologized for T holding him hostage in his room. Mark was unfazed. Instead, he relayed what they chatted about — his fire truck, how dark his room could get, the ceiling fan - and how much T seemed to like his room. I was surprised, waiting for Mark to describe the interaction as unusual, unexpected or something along those lines, but that discussion never surfaced, and we easily moved onto other topics. 

As Mark and I grew closer, so did the two of them. Mark accepted T as is, which laid the groundwork for their relationship to flourish. During T’s fascination with All Things Bear, Mark listened to endless facts about bears, had countless conversations and even surprised T and dressed up as a non-hibernating bear last winter.

He happily took turns pretending to be different characters in Fireman Sam, T’s favorite TV show. When T discovered his inner cyclist, Mark was always ready to accompany him on a ride.

Watching Mark immerse himself into T’s world with interest, enthusiasm and no hidden agenda was magical. In turn, T became more communicative and flexible and open to learning new things such as pumping a bike tire and Snap Circuits. Within a few months, T nicknamed him “Marky.” Like clockwork at around 5:30 every evening, he’d ask, “When is Marky coming for dinner?”      

When someone accepts your child as he is, it can shift your focus from what is missing or what needs to be changed to what’s right in front of you. Mark showed me that people outside of my immediate family could see and accept T for who he is, with all his strengths, challenges and quirks. It’s an important reminder that when people are seen and respected, it makes it that much easier for their best selves to emerge.

One day, I was listening to an episode of The Tim Ferriss Show and his guest, Greg McKeown, said the following: “If you focus on what you have, you gain what you lack. And if you focus on what you lack, you lose what you have.” This deeply resonated with me. As a parent of a child with autism, everyday challenges are often a way of life. However, those challenges become less daunting and manageable if you choose to see — and celebrate — what’s right in front of you. 

This post is dedicated to MM, who has shown me the importance of seeing what’s in front of you, above all else. 

Saturday, August 28, 2021

The Disability Blogger Weekend Link-up: voila!


What to do if you're new  

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Like this: The next phase of his life

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Wednesday, August 25, 2021

The next phase of his life

I happened to have an appointment for Max to meet with a local recreational program for adults with disabilities the same week that my Facebook and Instagram feeds were filled with photos of friends sending their teens off to college. The fact that Max wasn't starting college had been on my mind. I have more or less made peace with that, and I am beyond proud of his accomplishments, but those big life transitions still ping my heart.  As Dave, Max and I drove over to the office of the program, I was acutely aware of how different Max's path was. 

The nonprofit we were visiting also runs a residence and over the years, Dave and I have seen groups of adults from the home in restaurants, in parks and walking around. I'd always wondered if one day Max might be a part of a group like that. Now he's 18 and although it's not yet clear what his living situation will be, it was time for him to get started with the organization. Max needs more activities in his life he can do without us, and friends other than his family. 

The office looked like a home. "Advancing independence for adults with disabilities" read the sign hanging from the porch. From the second we stepped foot on the porch, it was clear who was in charge. 

"I don't like September!" Max announced, starting at the monthly event calendars pinned to a bulletin board. "I like August! August is hot!" 

Max and I do not see eye-to-eye on the heat thing, but I acknowledged that yes, we knew he preferred the heat and I pointed out that September weather can be hot, too. Soon the intake coordinator, Frank, invited us inside and we sat down in his office with Nicole, who runs the Social Wellness and Expressive Arts division. I'd later realize that I'd connected with her the year before, when my Girl Scout troop had sent residents greetings cards in the early stages of the pandemic when they couldn't receive visitors.

Frank had a list of questions for Max, starting with where he lived. 

"This is NOT my home!" Max announced. He looked at me, his sometimes spokesperson.

I explained that Max considers his house our "vacation" home because his true home is Los Angeles, or at least he'd like it to be.

"OK, why do you love Los Angeles so much?" asked Frank.

Max listed Disneyland, the weather, the fire station he is fond of, the fact that Dave's friends Jeff, Jon and Ben live there and Max considers them his friends. 

"They also have earthquakes in Los Angeles!" Frank noted. 

"There's SNOW here!" said Max. 

Frank asked Max what sort of activities he enjoys. Max reeled them off: taking walks to the fire department, going out for steak and salmon, bowling, movies, traveling. I know just how much Max appreciates exploring the world, but as we sat there I thought of how much progress he'd made since the days when just going to a restaurant terrified him. 

"Ask him what movie is coming out," I said.

"What movie is coming out?" Frank asked.

"Sing 2!" said Max, who often knows such things ahead of any of us. 

"Oh, we forgot yoga!" Dave said. Max absolutely loves yoga sessions with his Aunt Em

"That's great!" said Nicole. "We have yoga!"

Frank wanted to know about Max's level of independence. We spoke about him ambling around town on his own and using his Apple watch to stay in touch. He asked about chores Max does. 

"Oh, he does laundry!" Dave said. 

I looked at Dave. "Well, he doesn't really do laundry," I said. Max has hardly ever pitched in with it at home, and we've never enforced it. 

"He does laundry!" Dave insisted. Max nodded vigorously. 

Turned out they were referring to that one time  at the start of summer when he, Max and Sabrina took a trip to Los Angeles and Max put clothes into the washing machine. Dave was so awed by this rare show of laundry doing that he'd taken a photo, which he was now searching for on his phone. 

"See?!" said Dave, holding up his phone triumphantly. 

"OK, Max does laundry when he's in Los Angeles," I agreed. 

"Parents argue!" Frank said out loud, pretending to take notes on his pad, and we all cracked up. 

We talked about Max's cooking—he specializes in making scrambled eggs for breakfast, with someone standing nearby. We noted that he is a good brother to Ben, often cautioning him to not hurt himself or to go to bed. Max talked about how much he'd enjoyed camp. He spoke more about Los Angeles. Frank asked about friends; Max pointed to Dave, his BFF. 

"Max is one of the most social people you'll ever meet," I said. "Right, Max? You're so friendly!" 

Max nodded. 

"They call him the mayor of his school," I added.

"That's interesting, because there's a person in our program we call the mayor," said Frank. "Maybe he's going to be displaced!"

Max did the majority of the talking that day, in total command of the conversation. That, too, made me aware of just how far our boy had come, despite the grim odds and naysayers. The neurologist who said we could sign a Do Not Resuscitate for our newborn. The neonatologist who informed me that Max's future looked "ominous." The therapists, teachers and camp staffers who believed in Max when others turned him away from programs or couldn't see his abilities. The inchstones, the milestones and everything in between. 

Maybe he wasn't going to college but once again, Max was acing life. 

When we were done with the application, Max grinned his giant Max grin and asked, "Can I come back on Monday?" 

Things were still up in the air with programming because of the pandemic. Clearly, though, Max was ready for a new adventure. Me and Dave, too. 

Saturday, August 21, 2021

The Disability Blogger Weekend Link-up starts now


What to do if you're new  

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Thursday, August 19, 2021

What inclusion really looks like: the video

 

Max made a friend at camp this summer, a 13-year-old named Max who like him has a mop of dark hair and a sweet smile. Making friends is what campers do, and Max has made amazing connections over the years with his fellow bunkmates (who also have disabilities) at Camp Ramah in the Poconos, along with campers in other bunks.

I was ecstatic that Max got to attend camp this summer. They created a bubble: After all campers and staffers arrived, fully Covid-19 tested, nobody else new came to camp. Seeing him bust out was especially blissful, because to me it felt like Summer 2021 was making up for the summer that got cancelled. Max was dancing, singing, smiling his head off or doing all three at once in every photo and video.  

This was also the summer of Max & Max—the two of them cropped up repeatedly in photos on the website, arms draped over each other shoulders. That was something new in Max's life, an organic, not-coordinated, didn't-have-to-sign-up-for-it friendship with a person without disabilities. It's something I've struggled with for years: Max is a super-social guy, why didn't he have more friends of all abilities? 

As the parent of a person with disabilities who's needed to be proactive and downright pushy about getting her son included in programs, events and activities over the years, I've long known just how reciprocally awesome it can be. My son gets to be part of the fun and try out different activities, just like any child or teen deserves to. Other children and teens get to see how much a disabled person can be like them, grow comfortable with differences and accept them, understand the diverse kind of abilities that exist and grasp the glorious spectrum that is humanity. Win-win. 

While I browed the photos, though, it occurred to me that my Max had chosen to include this boy in his life, just like Max no. 2 and other campers had been encouraged to include Max's bunk in theirs. Inclusion is often taken to mean including people with disabilities (PWD). But the reverse happens, too: Max had let a PWOD (Person Without Disabilities) into his world.

Inclusion was on fully display in the talent show the camp had last week, where campers of all abilities performed together. The Maxes did a karaoke duet of Party in the USA and I've now watched the video approximately one billion times. "The energy was infectious, the love, respect and understanding of one another universal," wrote the program director, Orlee, when she shared the video on Facebook. Or as my friend Bronte said, "I love that Max's camp bubble includes a mosh pit fan club of teen girls."

Friday, August 13, 2021

The Disability Blogger Weekend Link-up is good to goooooo


What to do if you're new  

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Thursday, August 12, 2021

Pandemic update from our neck of the woods


The other day, I drove to a paint store to check out colors for our bathroom, which is sorely in need of a redo (and I am sorely in need of a Delta variant distraction). Two customers in the paint store had masks on; the staffer they were speaking with didn't. After I raided the paint samples and left, I started keeping tabs on the masked and unmasked. People who worked in the sandwich store: not wearing masks; the three other customers who were there with me, masked. Over at Target, practically everyone was masked, employees and customers alike. Home Depot: employees, masked; customers, mixed bag. As usual, everywhere I went there were people were wearing theirs below their nose. 

Max was eligible for his vaccine early on, so at this point he is nearing the six-month mark. I have been wondering about whether his protection is going to peter out, because his cerebral palsy puts him at higher risk for complications. (Research has found that pre-existing challenges with breathing in children with CP increase the risk factor for respiratory issues from Covid.)

Cases in our state are four times as high as they were a month ago. In our town, the stats have been rising, too. Of the documented cases last month, about 27 percent were breakthrough cases and 28 percent involved children under 12. 

Anecdotally, I'm hearing about more kids getting Covid. Last weekend we checked out a camp where we are thinking of sending Ben (who's almost 6) next summer. The staffer doing the tour said that the camp was in session last year and there were no cases of Covid. In the last two weeks, two kids have come down with it. 

Nothing struck me this week more than a story on our local Facebook group one mom shared. Eight family members of hers who attended a burial all came down with Covid, including a four-year-old. They were outside and socially distanced, but were not wearing masks. They caught it from a teen who was unaware he had it. Thankfully, the symptoms were mild—headache, runny nose, cough and fatigue, along with a loss of smell and taste. 

Our family has never stopped wearing masks in indoor public spaces, but this made me think we should probably start wearing them if we're outdoors and there are a number of people around. These days, we are back to wearing KN95's (Ben wears triple-layer masks with carbon filters in them). And we are back to eating out only at places with outdoor seating. 

People in our area, Northern New Jersey, have been generally good about wearing masks. The anti-maskers are more vehement in other parts of the country, like Governor Greg Abbott in Texas who is prohibiting local communities from enacting mask mandates and that pastor near Nashville, TN, who recently threatened to kick members out of his congregation if they showed up in masks and who referred to the delta variant as "nonsense."

What's "nonsense"—and should actually be considered a criminal offense—is a public figure telling anyone not to mask up. Masks: they work. They protect the unprotected: my Ben, and other kids under 12. They protect my Max and others who are at higher risk for complications from Covid. 

The evil twin of mask resistance is vaccination indignation. My eye doctor is only seeing patients who have gotten the Covid vaccine, and when you call his staff to make an appointment they inform you of that and ask you to bring your vaccination card. As I sat waiting for the doc to examine my eyes the other day, I heard a patient in the waiting room talking loudly and telling him that he had no right to only see vaccinated people and that she wasn't going to be getting one. He stayed calm, and told her that he would call her later to discuss it. Me, I felt my blood pressure rising. 

This is all to say: Get vaxxed, wear masks and I highly recommend making paint color decisions as a means of distraction. 

Beaming healthy vibes at all of you!

Are people in your area wearing masks?   

Friday, August 6, 2021

The Disability Blogger Weekend Link-up: for posts with the most


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: Students build a wheelchair for a dad with disabilities 

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

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

Wednesday, August 4, 2021

Students build a wheelchair stroller for a dad with disabilities: amazing but...


Imagine living in a world that lacked baby strollers. Hard to fathom, right? Now imagine that you're a parent with disabilities and you have no way of wheeling your baby around. Also hard to fathom, right? Sadly, that's true.

I've been thinking about this ever since I read about an article on GMA about a group of high school students who created a wheelchair attachment so a new dad could take his baby for a walk. 

Jeremy King, 37, of Germantown, Maryland, has had some physical challenges—including balance—ever since he underwent brain surgery for a tumor three years ago. He and his wife, Chelsea King, were expecting a baby last summer and realized there were few options that would enable him to stroll around with his tot and do other activities. Chelsea turned to a local high school and students in the course Making for Social Good.

The students came up with an attachment—the WheeStroll—that would connect an infant seat to a wheelchair, checking in with the couple for feedback and testing it with cinder blocks to ensure it was safe. They printed some of the parts on a 3D printer, and shared the instructions so others could build the attachment, too.

This was, obviously, a game-changer for this dad and his family. News outlets were thrilled to share a story with such a happy ending. But it was mind-boggling to me that this is a struggle a couple faced in 2021. While there are other bespoke creations and designs out there for connecting strollers to wheelchairs, it seems like they have not yet been produced. 

I mean: Two humans took jaunts into space in recent weeks, and our very own planet lacks ways for parents with disabilities to take their babies for walks?! 

I have often felt, in the 18 years that I've been raising a child with disabilities, seriously grateful for advances that have enabled him, everything from communication apps to adaptive clothes and sneakers. Still, the truth is that advances for people with disabilities lag way behind those for the general population. And I can't help but wonder how much better and easier life would be for my boy and other people with disabilities if more people and companies put their minds to this.

The field of accessible design—known as universal design—is growing. Still, it's common for friends and families of people with disabilities to be the ones who make innovations happen, like the dad who recently created a safety feature to stop power wheelchairs from tipping over. Sometimes, design labs at schools or social-good programs or 3D innovators lend their expertise. But where are the big companies putting their collective brains to this? The Elon Musks? Accessibility shouldn't be a side project.

It's been said that people with disabilities are the last minority in our culture to not get the attention, respect and consideration that other minority groups do. A dearth of innovation is just one of the many ways that it shows. Shouldn't society prioritize the well-being of people with disabilities, same as we do for other minorities?!

When I became a mom for the third time, I was floored by the number of baby products that had sprung up in the 11 years since I'd last had a kid, especially the extreme number of stroller options. Parents who use wheelchairs don't even have have one widely available choice for strollers.

While necessity may be the mother or father of invention, creating a more inclusive world should be the necessity of invention, period.  

[Gets off the wheelchair-accessible soapbox.]

Photo: Chelsea King

Friday, July 30, 2021

When moms lose their mojo and it's awesome

I dropped off school forms at the pediatrician's office the other day, which felt like a feat worthy of an Olympic gold medal. First of all, I remembered to do it. Second, the forms weren't even due for several weeks. Third, I actually made it out of the house. 

I had no illusions; it wasn't like I've gotten my mojo back. Just a few weeks before, I'd filled out the wrong birth year for our little guy in the online camp form, which I discovered when I called to ask why he wasn't in the group with his friends. 

I've lost my mojo. And it's been awesome.

Pre-pandemic, I was the typical nonstop working mom on a hamster wheel, mom keeping all the balls in the air, mom [insert whatever supermom cliche comes to mind]. I did great, as long as I never stopped—because everything would all fall apart, or so I thought. And then life as we knew it came to a grinding halt in March 2020. 

My work game stayed the same; my mom mojo was fully channeled into cleaning up and picking up after a family of five in the house all of the time, feeding them, keeping them safe and pondering how much TV would rot my children's brains. The GSD part of my brain entered survival mode; the part that stayed on top of schedules and forms, sign-ups for programs and getting kids to and from activities and playdates withered away because there was none of that.  

I had always been the type of person to stay up till midnight GSD-ing; now, I started crashing at around 10, zonked by the intensity of my days and anxiety over Covid. My usual drive to do things for my family and keep the house in order, uncluttered and fully working was consumed by keeping up with everything and accruing t.p., of course. I stopped caring about the bazillion little things I used to scramble to stay on top of, and just focused on existing. Made it through another day of virtual work, virtual learning and being cooped up with everyone? WIN. 

During our months of quarantining, I never found the time or motivation to do stuff like clean out the junk drawer, teach the children chess, adjust the wobbly mini trampoline in our basement, fix the grout peeling in a corner of the shower, organize the toys, get photos of Ben printed and hung (if you looked at our walls, you'd think we only had two children, not three), yada yada yada. Paperwork and clothes to give away piled up. Unlike seemingly everyone else I knew, I never even baked bread. (I have a long mental list of "If I didn't get around to it during the pandemic, I'm never gonna do it.") 

I was totally off my mojo, and so it's stayed. 

There's a bunch of mail lying on the kitchen counter
Old me: Open it before I crash.
New me: Lie on the sofa and watch The Crown.

We're running out of coffee pods/ketchup/seltzer/conditioner/tape____
Old me: Get it ASAP
New me: Get it at some point before we totally run out or soon after or let Dave deal or I guess we're just gonna run out.

My teen hasn't done her laundry in three weeks and her bedroom is a hot mess
Old me: Nag/do it for her.
New me:


That carry-on bag has been sitting in the foyer since Dave got home from a business trip
Old me: It would have been put away before it hit the floor.
New me: It's still there. 

Someone left the blender jar sitting in the dish rack with smoothie gunk on it
Old me: Clean it grumble-why-doesn't-anyone-else-notice-this-stuff-grumble-grumble-grumble.
New me: What should I binge-watch on Netflix next? 

The shrubs along our driveway are out of control

Old me: Squeeze in a trim at dusk and get eaten alive by mosquitoes.
New me: I could get used to that wild, overgrown look.

I bought a fairy garden kit for Ben a year ago
Old me: Feel guilty that I still haven't gotten around to putting it together with him
New me: 1) Stick it in the basement so it doesn't mock me 2) Reality check: He will never need therapy for that 3) "Want another ice pop?" 

There are five tubes of toothpaste open at once
Old me: "People! Why are there five tubes of toothpaste open at once?"
New me: [           ]

One of the recessed lights on the living room ceiling burned out
Old me: Replace the bulb the same day.
New me: Wave your hands in the air like you just don't care!

I'm pretty sure Max hasn't showered in three days
Old me: Bad mom. Bad, bad mom.
New me: I think I've read that's good for your skin? Or your hair? 

A groundhog has taken up residence under our shed
Old me: Get the pest control guy to relocate him.
New me: Look, guys, he's so cute!!!

Dave's towering pile o' t-shirts on his closet shelf is toppling over
Old me: Reorganize it grumble-why-can't-he-organize-it-grumble-grumble-grumble.
New me: Dave's towering pile o' t-shirts on his closet shelf is toppling over.

And you know what? My household is operating just fine, mainly because nobody else ever noticed most of this stuff except me. My family is fine—they have clean clothes, shoes that fit, food to eat, books to read, their favorite ice-cream. Me, I am doing more than fine: I'm less stressed and more well rested.

Turns out I don't need that exhausting and overwhelming go-go-go-get-it-all-done-now-now-now mentality for making our family and household function. Of course, there's still plenty of stress. But I'm not holding myself up to self-imposed standards of perfection nearly as often, struggling as much with parent performance anxiety or feeling compelled to tackle to-dos at 11:30 p.m.

Yesterday, I opened the fridge and saw a September expiration date on a milk carton. Typically, that fills me with dread—summer is ending soon, the back-to-school tornado will soon be upon us, yikes. But for once, I wasn't fazed. 

I spotted some milk residue on the shelf. 

I shut the door. 

Image: Getty Images

Saturday, July 24, 2021

The Disability Blogger Weekend Link-up: snag a spot!


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: Tough-love parenting, for the win

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.

Friday, July 23, 2021

Tough-love parenting for the win

Max is usually grinning his head off, dancing or doing both in every photo and video from camp. I'd been eagerly awaiting letters from him, and a couple recently arrived. Mainly, he wanted to find out when we'd next be visiting Los Angeles and he wanted me to mail him his UCLA sweatshirt. Max may be at camp, but he left his heart in Los Angeles, the place where he'd like to live.

I didn't recognize the handwriting. Hmmm. 

Max has, in recent years, been insistent on writing out classwork and homework instead of typing it. And his handwriting has really improved. I knew what was happening at camp: Why should he go to the trouble of writing if one of his awesome counselors could do it? It is entirely possible they had offered, and he took them up on it. Or maybe they assumed, because in the past counselors have written them for him. Or maybe he asked. Heck, we all get lazy during summer. 

Summer school is traditional for many students with intellectual disabilities because regression can be an issue. The academic kind has never been a problem for Max, one reason why we're fine with sending him to camp instead of school. But now, I wondered if a different kind of regression was happening. Max has been on such an independence surge for the past couple of years. And while maturity for him also means asking others to lend a hand when he needs it, I wanted to make sure he wasn't being coddled. 

This is the line I walk as the parent of a young adult with cerebral palsy. It happens at home with tasks, too, where it's natural for Max to be codependent...if we let him. Max, you can put your clothes in the hamper. Buddy, you can brush your teeth. 

The staff at the camp are beyond nurturing and caring; it is pretty much the only overnight camp program we found that was willing to take campers who needed assistance with life skills such as dressing and showering. They're super-encouraging, too (check out this video of him shooting hoops), and want what's best for Max. I just wanted to make sure they kept in mind that letting him do stuff himself is good for him. I texted the amazing program director to say that Max was capable of writing his own letters, and to encourage the counselors to have a can-do approach. 

This could very well mean I won't be getting more letters, I guess—but I'm feeling pretty confident that anytime soon, we'll be getting a note from Max asking when we're going to L.A.

Friday, July 16, 2021

The Disability Blogger Weekend Link-up is hot


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: This video just made my whole summer

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, July 15, 2021

This video just made my whole summer


"You can do it!" shouted his awesome camp supervisor.

And Max sure did. 

Tuesday, July 13, 2021

Why we need more cakes like this one

The woman standing at the Shop 'n Save bakery counter needed a cake for a celebration. A friendly face greeted her: Andrew, a young man with disabilities. He informed her that he couldn't write on it, she relayed in a Facebook post that went viral, "because he was nervous that customers have not been so nice to him and that it would be messy." 

My heart ached when I read that. Earlier in the day, I had reposted a plea for job opps from the principal of Max's school on my Facebook page and a few local ones. Max is in a program through which he's supposed to get work experience. It got suspended during the pandemic and Max was home for the year, anyway, until he got vaccinated. He managed to get some skills practice at home thanks to the ingenuity of the program director, but he and his fellow students have been missing out. Max was really eager to try out jobs.

During Max's recent IEP (Individualized Education Program) meeting, I asked about the job situation for the next year and it became clear there was a dearth of them. I wasn't surprised given that the pandemic has shut down a lot of small businesses, but I was concerned. I emailed the principal and mentioned that while I had every faith the school was doing what it could to secure jobs, this would be a good time to post about it on their Facebook page, send out an email and ask parents and the community to spread the word.  

The principal offered a list of tasks that students usually do well with: mailings, shredding, sorting, stuffing, stocking, simple data entry, fronting shelves, basic building maintenance, greeting people at stores, wiping tables, setting tables, sweeping, folding, assembling and packaging. He noted potential types of businesses, including offices of any size, retail stores, children's museums, gift shops, libraries, restaurants and animals shelters. 

It was sobering to consider Max's future in the work world. People with disabilities (PWD) have historically had fewer work prospects than people without disabilities, and Covid has disproportionately affected them. Last year marked the lowest unemployment rate for PWD in seven years, reports HR Dive

My spirits lifted as I continued reading the post. The woman told Andrew that he most certainly could write on the cake. "It will be perfect!" she reassured him. "I gave him a little boost by telling him that he can do ANYTHING he puts his mind and heart into." 

Andrew headed to the cake decorating table at that supermarket located in nowhere else but Fairchance, Pennsylvania. He turned around and asked Cheryl what she wanted the cake to say. 

"Celebrate together," she told him. 

He said it might take a while. 

She said that was OK.

Are you feeling all the feels? I am. Because encouraging people like this woman are not the norm, as I know all too well from raising my amazing young man with disabilities. 

If you are not the parent of a child with disabilities or don't have a family member with disabilities, perhaps you've gotten misty-eyed because it is such a feel-good story. But the awwww factor is not the point. The challenges that PWD face in the workforce is

This story would not be a thing if people with disabilities were a typical part of the workforce. 

It's pretty basic: If more people with disabilities had jobs, then PWD doing their jobs wouldn't be newsworthy. 

While some people with disabilities have fewer job options because of their physical or cognitive realities, mostly they are limited by closed-mindedness, stereotypes and prejudice. 

Andrew finished icing on the message, boxed the cake and brought it over to the customer.

"Do you like it?" he asked.

This story wouldn't be a big deal if people were more open-minded about those with disabilities.

The vast majority of people do not get that people with disabilities have plenty of abilities. Some can do jobs every bit as well as people without disabilities, it not better. Some, like my son, may take a little more time to accomplish tasks and require support and more patience and understanding. Some may not do things in the typical way, and the results may not always be up to perfection norms. But does perfection that conforms to societal standards always need to be the ultimate goal?

I don't know anything about Andrew's job history. Perhaps decorating cakes is something he always wanted to do and the store gave him the chance. Perhaps he is stubborn, like my Max can be, and chose to work without adaptive devices or other assistance. Maybe his skills were still coming along with help from a job coach. But I say, take another look at that cake and try to rethink your ideas of what a "perfect" cake is. Take another look at that cake and rethink your ideas of what a "perfect" worker is. Take another look at that cake and rethink your idea of what a "perfect" person is.  

Hopefully, this story doesn't end when you click off this post. 

Maybe you can be more patient and encouraging when you encounter a PWD in a store, at a business or wherever. Maybe you could let the manager or company know that you applaud them for hiring PWD. Cheryl planned tell the manager about her great customer service experience. I did the same last year when a resort we were at had a young man with cerebral palsy checking in people in at the pool.

If you own a business, company or nonprofit, consider affirmative action—it applies to people of all abilities, not just gender, race and sexuality. For starters, you could reach out to local schools for students with disabilities, programs and nonprofits that promote the employment of people with disabilities. You could kick off a discussion on your local business Facebook page to find out what other businesses have been doing and at the very least, get people thinking. You could make a difference in your community, and to people like my son and Andrew.

"I don't just like it, I LOVE it, Andrew," the woman replied to Andrew. "It's ABSOLUTELY perfect. See, just when you doubted yourself, you did it, right?!" 

And he said, "YES!" 

Image: Facebook 

Friday, July 9, 2021

The Disability Blogger Weekend Link-up took a break but now it's back!


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: Life is better at camp

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 7, 2021

Life is better at camp

Few things make a parent happier than knowing that your child is having a good old time at camp. This year should have been the summer to make up for the lack of camp in 2020 (I feel like the universe  owes all of us, right?!) but I was just a little dubious given Max's infatuation with Los Angeles. The smaller challenge: he thought the camp food isn't great (read: they don't offer steak or sushi). Still, in recent years he's had the time of his life there.

Max got an L.A. fix courtesy of Dave before he went off to camp. And yes, I felt good about Covid safety because he's vaccinated, every single person at camp got tested before they arrived and there will be more testing. Within a day of Max's arrival, we had glorious proof that he was ecstatic: Facebook photos and videos of Max gleefully dancing up a storm. Dave watched the videos again and again. "Wow, he is booogeying!" he said in awe.

It's been said that some of the best learning happens outside the classroom. That couldn't be more true for camp. Besides perfecting his dance moves, Max gets to try new activities, socialize with peers in a way that he doesn't otherwise, regularly practice swimming and flex his independence.

He can practice flirting, too (here he is on a boat, sandwiched between two cute girls)

Therapies at camp are of the spontaneous kind—look at him throwing his hands in the air! His school PT would be impressed. 

I am overwhelmed with gratitude for the camp staffers who made camp happen, no mean feat. I am forever indebted to the director of the program, Orlee, who accepted Max into camp when no other camp would and didn't think twice about the fact that he needed a hand with self-care. I am overjoyed to see this guy living his best summer life. What we'll do with all the money we are saving on sushi, steak and flights to L.A., I'm not yet sure.

Tuesday, June 29, 2021

Escape to Los Angeles

Sabrina is doing a summer program at the University of California in San Diego for a few weeks, and Dave ended up taking her and Max to Los Angeles for a week before he dropped her off. Max felt it the trip his right, given that he refers to L.A. as his "home" (he calls our actual house his "vacation home"). The messages I've gotten throughout the week have been rather awesome:

"We got to Los Angeles and Max keeps kissing me as he is so happy."

"We are in the Airbnb and Max is loading dishes into the dishwasher because he says it's his home."

"Mommy, this is where my birthday party will be! In Beverly Hills!"

"Mommy, Ben needs to come here."

"Mommy, why do we live in New Jersey?"

"Mommy I am very so happy."

Another awesome phone call came from Sabrina. As background info, Dave has taken to wearing a phone headset all of the time except for showering and sleeping. It's like living with a telemarketer (no offense, telemarketers). When Dave took Max and Sabrina to Disneyland, I got a call from Sabrina soon after they arrived. "Mommy! People think Daddy works here because of his headset!" Knowing Dave, I'm sure he gave them directions. Or Max did.

As usual, they enjoyed traveling and Max got to see some new fire stations. But they were likely just as happy to be away from our house (er, our vacation house) and apart from the rest of our family after 15 months of extreme togetherness. 

Wishing you and your family extreme summer happiness! 

Friday, June 25, 2021

Welcome to the Disability Blogger Weekend Link-up


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: It's not just a Father's Day card, it's a milestone

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.


Monday, June 21, 2021

It's not just a Father's Day card, it's a milestone


Over the years, the Father's Day and Mother's Day cards Max has brought home from school have always been unofficial milestone markers for me and Dave. Max wrote the card on his own! Max spelled on his own! Max knows that expression! But the words and sentiments he expressed in this year's card were astounding. I asked the teacher if he'd done it on his own. Yes, he had. "He just blew us away," she said.

It is no surprise to anyone in our family that Max's cards for Dave are amazing. He adores Dave and is in total awe of him. Dave is his best friend, the one who goes galavanting with him around New York City, takes him out for steak dinners, accompanies him on hunts to find new ice-cream shops and is generally willing to do anything and everything for Max—including those years when he'd hang out at Home Depot as Max zoomed around with a shopping cart

Max and Dave were cool with me sharing these cards. Make that, unabashedly boasting about the two of them. 


Dave and I had  to laugh over the cover of one card, where Max had written both "fire chief" (his job goal) and "movie" (he loves going to movies). "Max, is this card about you or me?" Dave teased him.


I had no idea Max even knew the word "patience."

I'd never before heard Max acknowledge how much the two of them like to joke together. 


See: "Max, is this card about you or me?"


I so love that Max was still thinking about Dave taking him to the prom two years ago. The two of them are excellent travel companions. Their last great trip was a cruise they went on a month before the coronavirus shutdown happened in March 2020. As I write this, Dave, Max and Sabrina are having the time of their life in L.A.

Max's words in this card were amazing. But this is the one that made me well up. 


It reads, "Dear Daddy, Happy Father's Day! I love you. You bring joy into my life."

Oh, yes, Dave does. And it was easy to tell, from the expression on Dave's face as he read the cards, just how much joy Max brings into his life as well.



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