Friday, December 31, 2021

The Disability Blogger Weekend Link-up: Happpppy New Year


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 we've lost, what we still have

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Tuesday, December 28, 2021

Is it OK if your child with disabilities doesn't have homework?

This guest post is by Jane Kim, a writer and mom of a nine-year-old with autism. She works in the field of immigration and lives with her family in the Philadelphia suburbs.

The subject of homework is way more controversial than when I grew up, when it was a given. These days, not every expert agrees it's necessary or even always beneficial. As is always the case, it can depend on your child's needs. Max is in his fourth year of high school and still benefits from having some, since he learns by repetition. Read on for Jane's take.

My son is in third grade and is at a new school for children with learning differences. Homework is optional. Should I embrace that?

At curriculum night, when his teacher first announced that homework was optional, my body and mind had different reactions. My shoulders dropped and I let out a long exhale. My jaw suddenly felt more relaxed. One less thing to stress about! Within nanoseconds, though, my mind caught up. No homework? How absurd! As a law school graduate and person with a career, all I’d ever known was homework. Opting for no homework felt a bit like a betrayal of my past, a nonrecognition of the countless hours spent as a child and young adult that shaped me and helped me become the best version of myself…right? 

Way before my son, T, understood the concept of homework, I was given homework by his therapists and physicians. As a baby, he was very quiet, and met most milestones shakily. To encourage receptive and expressive language, the speech therapist recommended I narrate my actions. At the grocery store, I’d point out the different fruits and vegetables and chat about ingredients needed for dinner. For OT, I was to promote bilateral coordination activities such as cutting with scissors and catching a ball with both hands. 

T also struggled with typical play, so we hired a play therapist to join his team. She would send home a large plastic bin of manipulatives and various games to play which were swapped out for new games when he got the hang of certain ones. 

He was diagnosed with Autism Spectrum Disorder (ASD) when he was around 3 years old, and his already tight schedule ramped-up with Applied Behavioral Analysis (ABA) therapy. When your child has an ASD diagnosis, parents are given oppressive amounts of things to do (i.e. medical evaluations, obtaining services, identifying the best ABA program for your child’s needs, finding providers, the list goes on) well before homework from school begins. For ABA to be the most effective, parents and caregivers need to be trained on ABA techniques and be actively involved in determining and tweaking goals for their child. I often felt as if I was racing against time, and losing badly.   

In first grade, when T started getting homework, it felt incredibly haphazard and disjointed. My expectation of his homework was an opportunity for him to recall what he learned at school that day, do it (mostly) on his own and build some sense of pride and a love of learning. Boy was I wrong! Often, it was as if he was seeing the material for the first time. Other times, he could partially complete the homework, but needed my assistance to complete the rest. I began to dread homework time, as did T. It was stressful for the both of us, and over a two-year period, we never got into a rhythm. 

T grew to resent and fear homework. At the time, for a child that was not at all vocal about his preferences, he would ask, “Friday we have no homework, right?” When I answered yes, he’d respond with “Yay!” With T starting a new school as a third grader, I wanted to look at homework with fresh eyes and see if it made sense for him now that it was optional.

After doing some research, it turns out–unsurprisingly–there are two camps when it comes to the quantity and the type of homework. The first camp endorses 10 minutes per grade level, and up to 2 hours a night for high-school students, which correlates with good, standardized test scores. The second camp believes homework doesn’t help (at least the homework typically given in our schools). It also questions standardized testing as an accurate measure of achievement. Do good test scores equate to intelligence, and therefore professional and personal success? 

As an average test taker, I wasn’t convinced. But it’s incredibly hard to deviate from your own personal experiences. I filled my older sister in on my dilemma, a person I share the most common history with, hoping she would have a deep conviction that would sway me. She didn’t, which surprised me. Instead, she told me different kids had different needs. I spoke with T’s teacher about it. She pointed out that he’s in a small class and is getting as much individualized attention as he can - with the benefits of a group setting. The kids work hard during the day and can’t get away with much, due to the small class size. That’s when I decided against homework in the typical sense. 

These days, we rarely do worksheets (with the exception of writing practice) as T benefits from repetition in this area. There are always opportunities to learn, whether it’s preparing a simple recipe or measuring ingredients, setting up a board game to play, reading poems and/or listening to songs and then interpreting the meaning. 

Generally, I follow his lead when it comes to his interests and find an activity that engages him. Sometimes there are neighborhood scavenger hunts. Math is challenging for T, so his teacher sends home individualized math activities of concepts they are working on. And if all else fails, there’s 20 minutes of reading anything, incorporated into a reading log. With winter break here, we plan on playing card games, reading a book on Martin Luther King Jr., making holiday snacks and writing a wish list on places to visit in 2022 (and then perhaps explore them by video).  

In making this decision (for now), I asked myself the following questions: Who is my child? How does he learn best? What’s the worst that can happen?  I’m getting more comfortable with the idea of no homework. And in that process, I learned a bit about myself: As a parent, what has worked for me may not be the best for him—and it’s my job to learn what’s best for his social, emotional and academic well-being. With every passing year, he teaches me more and more. 

Find Jane on Twitter @JKimRites.

Saturday, December 25, 2021

The Disability Blogger Weekend Link-up: Happy Holidays!


What to do if you're new  

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Friday, December 24, 2021

What we've lost, what we still have

The other day, I served lunch at Ben's school. I've been waiting six years to do this. Once Sabrina left for middle school, there was no more doling out pizza and spying on her interacting with her friends. But now Ben's in kindergarten and finally, they let in parents to help with lunch. 

I had a vision of hordes of kids gathered in the lunchroom as I walked in for my shift. But when I arrived, it was sadly and eerily empty. The volunteers' job was to place delivered sandwiches and chips in bags and walk them over to classrooms. 

I stood in the giant room and looked around. In my head, I could hear the loud, happy chatter of kids. I could picture Sabrina sitting and giggling with her friends and how happy she was to see me back in the day when she used to be happy to see me. I remembered the kids who'd come up to the serving station and ask for an extra slice of pizza or fries. Only Ben wasn't having that experience; all the kids eat outdoors now. I had to duck out into the hallway and take a walk because tears welled up. 

The last couple of weeks have been sobering. Yes, Omricon Omricon Omricon, but also because I've been confronting what my children are missing out on. Last week, I had a chat with Max's assistant principal and the lovely person who oversees the work experience program at his school. Max has been working at a church since October, putting together gift bags for new moms and doing other tasks. The word from the job coach is, he does a great job and is super-social.   

This may be the only real work experience Max gets for the school year; there are way fewer companies and businesses offering opps to his school. Some places have closed. Some are wary of letting in outsiders, or lack the resources. I expressed my concerns, but the school has no answers to give. They are doing their best, supplementing Max's experience with a workshop at school in which students do office-related tasks, make deliveries in the building and complete jobs from businesses (say, stuffing envelopes). I was told to see whether there might be volunteer work Max could do in the community.

I mused out loud about working my network to see if I could find a weekend job for him. I ached inside about the job experiences he's missed out on this year and last. I ached about the social events he hasn't had—the dances at school, the get-togethers with students from other schools, school sleepovers (they used to be offered a couple of times a year) and various trips. Ben and Sabrina have also missed out on school events and other activities, but for Max, school has long been his main source of socializing. 

I grabbed a big tote bag of sandwiches for the kindergarten classes and headed to Ben's room. Along the way, I passed a wall of photos of students and my immediate reaction was, "Eeep, no masks!" It's this pandemic habit I've developed; if I'm watching TV and there's a party or social gathering, my first reaction is: They're not masked, it's not safe! I stood in the doorway of Ben's class until he saw me and his whole face lit up and my whole heart filled up. I walked them out, distributed the sandwiches and crouched down next to Ben.

"Can you come next week too?" was the first question out of his mouth.

"I want my Daddy to serve lunch with you next week!" a little girl announced. 

I watched the kids happily munch their sandwiches. I listened to their chitchat. It was just a row of them, socially distanced, and they all seemed perfectly content. "I'm so excited that you're here!" he said.

It was total lunch mom satisfaction and total lunch mom therapy.

I mean, isn't that the best cure for the Covid blues—counting your blessings and oaking up your children's smiles and sweetness and love (er, when you aren't squabbling because you've been holed up together for far too l).

For sure, gratitude hasn't always come easy in the last two years. Once, I wrote a whole article about it for Health Magazine when I worked there. I learned some good tips then fell out of practice, although I've occasionally forced myself to consider how relatively lucky we and our circumstances are.

Max's lack of work experience may not be lucky, but he's learning the"soft skills" needed for employment—listening and focusing, responding to requests, following directions, using your manners, telling everyone you're moving to Los Angeles. Oh, wait. And if I know anything about raising a child with disabilities, sometimes you have to make your own luck happen. Come January, I'm going to try and figure out some other work opp for him. My biggest challenge may be that he'll insist on doing it in Los Angeles, his fantasy home. 

My children's lack of socialization isn't at all lucky, either. Winter's not going to make it easy to hang inside with friends and there's a real risk of schools going virtual again. But when I work it through in my head, we just have to hang in there till March-ish, when we'll all head outside again. 

I've more or less accepted that we could all get Covid. That's a worry technique I've picked up through the years: You imagine a worst-case scenario, then you work it through in your head and come to terms with it. It's mostly scary to think of for Max, whose cerebral palsy poses risks unknown. But I trust in the science. I believe in the efficacy of vaccines to reduce the worst symptoms. And I believe in the power of family and love. 

Happy Holidays to you and yours.

xo

Saturday, December 18, 2021

The Disability Blogger Weekend Link-up is back


What to do if you're new  

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Friday, December 10, 2021

All I ever wanted for him

When Max was little and people would say "As long as he's happy," I'd bristle. Because I wanted so much more for Max. I wanted him to achieve his physical capabilities, whatever they might be. I wanted him to be able to express himself with sounds, words or whatever worked for him. I wanted him to learn to read and write. I wanted him to have friendships. I wanted him to gain independence. I wanted All The Things. 

Last Saturday night—a week before Max's 19th birthday—All The Things were clear to see. 

We were at the bar mitzvah of my friend Lisa's son. (Congrats, Jonah!) Earlier that day, Max had sat through the morning service. A couple of times, when he knew prayers, he'd approached the podium to say them with Jonah. That afternoon, Dave and I headed out of the hotel for some pampering pedicures while Max took a walk around a nearby lake with a group of my friends.  

At the party that evening, when Jonah made his big entrance, Max clapped wildly. He hung out with me and Dave for a little, pointing out on his watch the weather in Los Angeles and telling guests about his plans to move there. Soon enough, Max decided that he wasn't going to sit with us. He wanted to be at the teen table, and he wanted my friend Lyla's cute daughter, G, with him. Off they went.  

Dave and I chatted with people at our table. We took pictures in the photo booth. When the plates of steak and salmon were served, I cut up the food into bite-sized pieces and delivered it to Max. From across the room, I watched him and G eating, side by side. When she got up, Max—ever the enthusiastic eater—continued to shovel down food on his own. At some point, he asked her to go to the photo booth with him.

Throughout the night, Max was on the dance floor. A couple of other moms grooved with him on occasion. He joined other young guests in a game of musical chairs. Mostly he was on his own, having a blast.

I watched him dance from our table, Stalker Mom that I am. I'd already been feeling sentimental about his upcoming birthday, and I totally welled up. When Max was a tot, I couldn't have ever imagined a scene in which he was roaming around on his own, eating independently, making new friends, conversing with people, dancing and doing his own thing separate and apart from me and Dave.

And we were there to help, as needed. And friends were there to help, as needed. And Max knew how to ask for help, if needed.

And there he was on the dance floor, freely moving his body with a smile as bright as the DJ's lights.

And it was all I ever wanted for him. 

Saturday, December 4, 2021

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


What to do if you're new  

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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


What to do if you're new  

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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


What to do if you're new  

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

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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!


What to do if you're new  

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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


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Like this: Love That Max: Someone's child has a speech delay—do you say something? 

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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  

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

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, October 1, 2021

Get ready, it's 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: Love That Max: The thing about the red nail polish

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, 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  

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

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, September 17, 2021

The Disability Blogger Weekend Link-up: here!


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

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, 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. 



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