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  

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

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 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  

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: What inclusion really looks like: the video

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, 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  

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: Pandemic update from our neck of the woods

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, 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

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