Saturday, December 4, 2021

The Disability Blogger Weekend Link-up is getting in the spirit


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Sunday, November 28, 2021

The Disability Blogger Weekend Link-up is live!


What to do if you're new  

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Friday, November 26, 2021

Great gifts for kids and teens with disabilities: A little list of toys and cool stuff


This year brings you a super-curated list of gifts that are great for children and teens with disabilities, recommended by kids, teens, therapists, Max and yours truly. Enjoy!

Sensory Pops

I mean, can you ever have enough pop-its? Nope. This one's quality-made, super-cute and oh-so-poppy.

Buddha Board: portable water painting with a brush

Awesome for children and adults of all ages. You just fill the brush cap with water then doodle on the 10" x 10" board; the drawings fade as the water dries.  

Spikeball

Whomp the ball against the net and it'll bounce satisfyingly high. It's meant for outdoors but we've used ours indoors. 

Playzone-Fit Balance Stepping Stones

Kids can practice gross-motor skills and coordination, with an adult lending a hand. They can walk from step to step, jump or just walk around them.  There's also an obstacle trail version

National Geographic Glowing Marble Run

Marble runs are always cool, but this one's glow in the dark. Kids with fine-motor skill challenges may need a hand putting pieces together and shining the included UV light on the marbles to get them to light up. Hack for dropping marbles down the tubes: Insert a little plastic funnel at the opening, so children who tend to grab a bunch of marbles at once can drop them in. 

Aromatherapy play dough by Land of Dough

I'm a big fan of this new play dough—it's all naturally made of natural colors, organic essential oils and eco-friendly glitter. It air dries for sculpting. 

Amazon gift card in a pop-up box

Max is getting a $50 gift card for the holidays, so he can choose his own darn present. He's also getting a gift card to his favorite restaurant.

SpinAgain Stacking Toy

A set of six discs that spin down a 16.5-inch-tall pole—inspiring for practicing fine-motor skills. It's sturdy and BPA-free.

Echo Dot Kids 

Encourages kids to use their words and make Alexa requests. For teens, there's always the sleek 4th generation Echo Dot.


Sensory Box subscription


Created for teens and adults, this subscription service delivers a monthly box of sensory items selected by an occupational therapist. Starting at $70 for a quarterly plan: four boxes a year, one per season.

Palm-grip crayons

Cuties like these are easier to grasp than standard skinny crayons. 

Large-grip magnifier and tweezers

Encourage exploring and pincer-grasping.

Personalized bathrobe

Grab a bathrobe—a solid soft kind for boys or for girls and for little kids, a unicorn one (my all-time fave!) or a dinosaur one. Pick up a patch that reflects your child's interests, then iron or sew it on. I got Max a Fire Department of Los Angeles patch, given his determination to move to L.A.


Mojelo 12-Pack Stretch String Fidgets

They stretch. They're rainbow colors. They're portable, so great for restaurants. Win, win, win!

Balance Balls from Mama May I 

Balance them, line them up, or just knock them down: these graspable balls are well made and engaging, from a company that hand-makes toys for play through sensory experiences. 

Deluxe Slime Kit Mix & Mash by Compound Kings

The slime trend doesn't seem to be going away anytime soon, so if you can't beat 'em.... This kit comes with a nice variety of mix-ins.  



Design & Build Water Blocks by Lakeshore Learning

I love stuff from this company—it's consistently well made and engaging. These blocks stick to each other when wet, so it's easy for kids to build on them and practice fine-motor skills in the tub. I am also a fan of Blockaroo Magnetic Foam Building Blocks, which can also be used in the tub...and tossed into the dishwasher to clean! The Rocket Set, Speed Boat and Helicopter Set are more reasonably priced.


Sanuk Unisex Lil Puffer Mule

Adorbs slip-ons with rubber soles that can enable kids to independently slip them on. Available in Little Kid size (4 to 8 years old) and Big Kid size (8 to 12 years old).

And if you'd like to check out previous Love That Max gift guides...

Friday, November 19, 2021

The Disability Blogger Weekend Link-up


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Like this: Stuff 6-year-olds say (as in, Max's little bro)

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Friday, November 12, 2021

The Disability Blogger Weekend Link-up starts now


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Thursday, November 11, 2021

Stuff 6-year-olds say

"Mommy were you here when there were dinosaurs?"

"What is the opposite of sink?"

"What is the opposite of poop?"

"How do you make a bag?"

"I hadded a nightmare!"

"Can I have a snack for dinner and not dinner?"

"What does 'gxo" spell? What? It has a vowel in it!"

"Were rainbows here in the old days?"

"ALEXA! How much people is in the world?" [7.87 billion, says Alexa.)

"How do you say this?"

"I can't go to school today because I hurt my penis on the monkey bars."

"Is there a food named 'champagne?'"

"You're not the boss! Joe Biden is!"

"What happens if you minus a mile from 12 inches?" 

"Why did you make me the youngest kid? I want to be the oldest! It's not fair!"

"How do you get to be a celebrity?"

"What is the opposite of stapler?"

"How do you get to be rich?"

"If you have another kid I won't be the youngest! Can you have another kid?"

"How many days is 6 thousand million minutes?" 

Me: "Do you have to go to the bathroom? You're holding yourself." Ben: "It's just for fun."

"What is the opposite of God?"

Friday, November 5, 2021

The Disability Blogger Weekend Link-up is good to go


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Monday, November 1, 2021

The one who didn't want anything to do with us on Halloween

On Halloween, a neighbor sent out a text to a local Facebook group I'm in—she'd ordered a trick-or-treat bucket from Amazon only it was too small, did anyone have an extra? I did, and was happy to pay it forward. We had a big fuchsia bucket courtesy of another neighbor. Years ago, when Max was obsessed with purple, we were doing our thing on Halloween and he'd spotted the bucket at a neighbor's house, holding treats. Max wanted it and I'd ended up trading buckets with the guy.

This year, Max's getup was once again an authentic fire department jacket we'd been gifted from our local station years ago for his birthday—with a couple of changes. I had to cover up the name of our town with black fabric and double-sided tape, and add LAFD (Los Angeles Fire Department) in sticky letters. Because Max is hell bent on moving to L.A.

Ben was a Benosauraus, and Sabrina and a friend dressed up as SNL's Pete Davidson. 

We started cruising for candy and Max kept walking ahead of us. 

"BYE!" he said. 

I wasn't going to let him get away so easily, mainly because a lot of people's homes in our areas have steps, and I wasn't sure how he'd navigate them. Max has no interest in candy whatsoever but enjoys the thrill of the hunt. Also, I wanted to enjoy the afternoon with him.

En route, we walked by a dad dressed as a firefighter wearing a Fire Chief helmet. Max gazed at it, enviously; his own helmet said "Captain" and Max wanted a promotion. He looked at the guy hopefully but, unlike the purple candy bucket dude, this guy was not up for a trade. 

"I'll order a Fire Chief hat for you," I promised.

"Los Angeles!" Max said. As in, next year I'm planning to trick-or-treat in Los Angeles.

Later, we passed by another family and the mom stared at Max.

"Excuse me," she said, "but does he like to hang out across the street from the fire station?" 

"Yep," I said. "That's him. Right, Max?"

Max nodded enthusiastically. One of his favorite activities is walking to the fire department and standing on the street corner across from it. I've gotten messages from people who know him, asking if he was OK or lost. He's OK.  

Later on, we were chilling on our front porch, basking in the chemical glow of the smoke machine and doling out candy. Max decided to take a bucket and go out on his own.  

A good 45 minutes went by. Dusk was falling. Where was he? I texted. The answer, basically, was DOH. 


He came back with a bagful of candy and a giant grin on his face. Later, Ben and I went out for another lap and a number of people mentioned Max had been by; they'd walked down their steps and held out their bowls of candy.

It was a good Halloween.

Friday, October 29, 2021

The Disability Blogger Weekend Linkup: Your posts are boo-tiful!


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Tuesday, October 26, 2021

The ghosts in the pediatrician's exam room

This week, I took Ben for his annual checkup. We haven't been to the pediatrician a lot this past year and a half; being home a lot, masks and boatloads of sanitizer means nobody's getting sick as much. Ever ponder how infrequently your children washed their hands before all this started?! I do.

As we waited (and waited) in the exam room for the doctor to show up (some of you may recall I have Feelings about the waits at this practice) and Ben stared at my phone (proven whining antidote), I looked around and could not believe that I've been coming here for 18 years. And yes, that's the math—Max is going to be 19 in a couple of months. NINETEEN. 

I stared at the baby scale and couldn't believe any of my children were ever tiny enough to fit on it.

I stared at the standing scale and remembered what it was like to hold up Max's tiny body when he wasn't able to balance himself on it.

I could practically hear Max's sobs in the room—until he was around 5 or 6, he couldn't handle coming here (or, really, anywhere).  

I could viscerally feel the anxiety that flooded through me when I'd come for for Max's checkups. I dreaded talking about developmental stuff, because Max was so far behind and it took me a long time to realize that he was on his own unique curve. 

I remembered sitting on the crinkly paper, as I held Max in my arms, tears flowing as the kindly pediatrician tried to give me hope.  

Ben's doc came in. Check, check, check, check—he's doing great. 

I looked at the measuring tape poking out of her pocket. Max did not like the feel of it being wrapped around his head. For me, it was a whole other kind of torture—the small size of his head (microcephaly was a result of his stroke) made me terrified for his future. I mean, pretty much everything made me terrified about what the future held for my beautiful boy but getting the cold hard stats about the diminished size of his brain sank me. Now I know that it was no prediction of just how amazing Max would turn out. 

Ben brought me back to the present.

"You want to see my muscles?" he asked the doctor, and he flexed and she said "You're strong!" and I smiled. 

"It's my birthday!" he informed her. (It was the previous week). "I'm SIX!" 

"You're getting old," she agreed.

After the doctor left, I sat down next to Ben on the exam room table to wait for the medical assistant to do a vision check. He leaned into me and I felt the warmth of his little body. And suddenly, once again, it was just the two of us in that exam room. The ghosts had gone. 

Friday, October 22, 2021

The Disability Blogger Weekend Link-up: Here we go


What to do if you're new  

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Friday, October 15, 2021

The Disability Blogger Weekend Link-up: post it!


What to do if you're new  

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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  

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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


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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


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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  

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.