Thursday, December 31, 2020

Since we've no place to go, let's test-drive a Tesla

Max is obsessed with Teslas, and the other day, Dave surprised him by arranging a test drive. We got to keep it overnight, too. Added bonuses: It was red and had California license plates, where Max would like to live. 

The Tesla people assured us they were doing due diligence in sanitizing cars, and we planned to crack open the windows. Dave and Max went off to pick it up, came home and grabbed Sabrina, and then they all went for a joy ride. 

We would have let Max take a turn at the wheel on our dead-end street, but he declined. For him, just sitting in our driveway and opening and closing the doors was a thrill.  

We drove to Nowheresville the next day, had actual fun recharging the car, and debated whether we would lease one. I don't care that much about what kind of car we have, but I would not be sad to ditch our minivan. Also: Anything new in our lives would be a welcome distraction.

A year ago, I couldn't have imagined that test-driving a car would be such a big adventure. But here we are, finding the fun where we can, focusing on feeling grateful for what we have and trying our best not to drive each other crazy.

Beaming hugs, fun, and all the healthy vibes at you. Here's to a truly happy 2021, friends.

Monday, December 28, 2020

The five best words

The other day, I came downstairs carrying a little backpack I was planning to give to a neighbor's kid, since Ben had grown out of it. It was red, imprinted with the words "fire fighter" and had patches and reflective trim. I dropped it on a chair in the living room as I grabbed my coat. Max walked in, took one look and said "Mine!" 

"Max, aren't you too big for that?" I said.

"No!" he said. He made me put it on him and it fit, so he walked around with it for a bit then headed over to Ben, who was chilling on the sofa. 

"Firefighter?" Max asked. He wanted to know if Ben wanted to be a firefighter when he grew up, just like Max wants to be.

I was having deep thoughts about that backpack. Max's focus has shifted, in the last couple of years, from talking nonstop about becoming a firefighter to talking nonstop about moving to Los Angeles—where he'd like to be a firefighter, but still, his conversations these days mostly consist of his fantasy move. 

I wondered if he was going to start wearing the backpack. Not that we are going much of anywhere, but an 18-year-old wearing a child's backpack would draw attention on walks around town. 

But wasn't I past caring about what people thought of Max? If it made him happy, did it even matter? 

But then, wasn't he 18 and seemingly past the whole dress-up thing? Wasn't it my job to help him fit in as much as possible? 

But then: It makes him happy. He is who is he is. He is old enough to make his own decisions.

Let it be. 

Max stood there, waiting for Ben to answer. 

"Ben, do you want to be a police officer?" I asked.

"No!" he said.

"How about a doctor?" I asked.

"No!" he said.

"A clown?" I teased him.


"OK, what do you want to be when you grow up?" I asked.

And with that, he grinned and he said, "I want to be Max."

Heart. Melt.

Saturday, December 26, 2020

The Disability Blogger Weekend link-up: Happy Holidays!

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: Calm down, he said

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, December 24, 2020

Tuesday, December 22, 2020

Calm down, he said

We've all been blaming 2020 for anything bad or bizarre that happens, but that wasn't the case the other day when Max had an accident. Although it happened during a work zoom call, so I guess it was in keeping with this year. 

I was sitting in my office attic, enjoying an end-of-year virtual staff gathering, when all of a sudden I heard  THUMP THUMP THUMP THUMP THUMP and our babysitter screeched. Instantly, I knew Max had fallen down the stairs. Heart pounding, I ran down. He was standing at the foot of the stairs, looking a little scared. Our babysitter was shaking.

"Are you OK?" I asked, as calmly as I could.

The stairs in our house make me nervous. Although we have banisters, the steps wind around a curve. Max first climbed stairs on his own at age 9, while we were on vacation. That ability is something I've never stop appreciating because it is quite the feat of fine-motor skills. He still likes to scramble up on his hands and knees, especially if nobody is there next to him to give him a hand—he feels most secure that way. But as he's gotten taller, he's occasionally gotten stuck on steps, unable to propel himself forward. His school physical therapist has worked with him in the building's stairways, but Max has been learning virtually since March. 

I have an awful stair story in my head. When Max was a baby, his physical therapist told me about a mom who had tripped and fallen down the stairs holding her infant. The baby fell out of her arms and sustained brain damage, and that is how the therapist had come to treat him. This is a core reason for my stairphobia. 

The day Max fell, he had been going up the stairs in socks (which he usually doesn't do) and had slipped and fallen.  

"I'm OK!" Max said. 

"Does anything hurt?" I asked.

"No!" he answered as I checked his back to see if it looked OK.

Max stared at me, my face contorted with worry, and the sitter. 

"Calm down!" he said. 

And with those words, the sitter cracked a smile and relief flooded through me. Because Max did seem OK and, as the coming days revealed, he had not gotten injured (lucky). Because, being Max, he cares so much about other people's well-being and wanted to make sure we were OK even though he was the one who'd nearly gotten hurt. And because my boy was mature enough to express it.

File under: phew.

Friday, December 18, 2020

The Disability Blogger Weekend Link-up is 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: Love That Max: The therapists and teachers who adore our children

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.

Tuesday, December 15, 2020

Gather near to us, once more: the therapists and teachers who adore our children

In the last week, two of Max's former therapists and one teacher have reached out about him. Therapists have always been the wind behind Max's development wings, and he has formed amazing relationships with them over the years. I knew he'd be thrilled to see them and vice versa. A pandemic win-win. 

First, his old OT asked if she could stop by to do a socially distant hello in honor of Max's 18th birthday. She said she missed his smile and his "happy self." This OT had always been especially wonderful with Max—she was so attentive to his needs, and she was his buddy when the class went out on trips and Max needed a helping hand. I forgot to tell Max that she was coming, and so on Friday I was upstairs working in my attic when she showed up at the house. It was unusually warm outside for December and Max had been hanging at the front door. She knew Max loves ice-cream, and she'd brought a tub of it from Carvel—and she remembered that he in particular loved "swirl" (chocolate and vanilla together). 

The two of them ended up taking a walk around the neighborhood and catching up, and then I had the pleasure of chatting with her as we stood on our front porch. She mentioned again how happy Max had always been and hard-working, and I beamed behind my mask.

The very next day, his speech therapist from his elementary school reached out to me. She also knew Max had turned 18, and wanted to give him something. She said it was part of a school project, and offered to come by. Max was excited. This was the speech therapist who had gotten him involved in a pilot iPad program back when they first came out, and I had always admired her smarts and  gentle ways. 

And so, Jen stopped by and I had all the feels when I saw her as I thought of his amazing old school and just how far he'd come during this time there. We chatted for a bit and, just like the other therapist, she spoke so fondly of Max.

Our children's bonds with their therapists and teachers are like no others in their lives. Not only are these people there to physically and cognitively enable and coach our children, they give them can-do confidence and serve as their cheerleaders. One of Max's most formative teachers was Linda, who used to call him a "smart guy"—and Max started calling himself that, too. Linda came to his bar mitzvah and when Max was done with the service, he dashed down the aisle and threw his arms around her.  

Jen was pitching in with a leadership project at the school in which students were helping a young woman from Zimbabwe get an education. They were selling Yuda Bands (from the Spanish word to "help") to support her. The bracelets are made of leather and coconut in Guatemala, and every one purchased pays the school fees of a high-schooler for a week.  

Jen had a bracelet to give Max. She said it reminded her of him, and slipped it onto his hand.

The very next day, the amazing woman who used to run Max's skills program messaged me to ask how he was doing. Max will be doing a Facetime with her, soon.

It's no coincidence that this outreach is happening during the holiday times. More than ever, we need the warmth, familiarity and comfort of those connections. And the joy. Oh, the joy. 

Friday, December 11, 2020

The Disability Blogger Weekend Link-up is late because what day is this anyway?

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: In honor of Max's birthday: then and now

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, December 10, 2020

In honor of Max's 18th birthday: then and now

"Wow, he's 18?"


"How is that possible?!" 

Friends and family can't fully believe that Max turned 18 today. Me, either. In some ways, his birth doesn't feel like that long ago, because I so vividly and viscerally recall each and every part of what happened afterward. And then, there's Max—my sunshine-y, bright, handsome, determined, charismatic, charming, kind, funny, big-hearted firstborn. The living proof that despite all the grim prognoses, tears, grief, and anxiety, he turned out just fine. More than fine. Super-duper-extra fine. 

This is a celebration of just how far he's come. 

Then: I was despondent that our little guy wasn't going to get to enjoy life like other kids did. 
Now: I'm grateful that Max is living his best life, other than the fact that he hasn't yet been able to move to Los Angeles (his dream destination). He enjoys hanging at his grandparents' house, eating lots of steak and baked ziti, watching Victorious on TV and fire truck videos on YouTube, doing yoga with his aunt Emily and practicing karate moves with Dave. He's been to Disney World and Disneyland, and generally loves to travel. He's had a bar mitzvah on his terms. He goes to summer camp. I wouldn't say he feels there is stuff he's missing out on or that I, as his parent, do. I sometimes wonder if he might someday have a relationship and get married, but: Whatever will be, will be.

I filled the basement playroom with developmental toys in desperate hope of helping Max come along.
Now: Max has taken over the basement (aka The Max Cave) and allows us to enter on occasion. 

Then: Booked therapy after therapy after therapy after therapy. At one point, Max had 12 sessions at week between Early Intervention and private therapies, including alternate forms like craniosacral therapy and hyperbaric oxygen treatment. 
Now: Max emails therapists to cancel therapies when he'd rather do something else. 

Then: In Max's first year, as I drove him to therapists and specialists, I sometimes had to pull the car over to the side of the road because I was crying so hard. It worried me that he wasn't gurgling in the back seat or coo-ing like typically-developing babies did. The silence in the car was oppressive. 
Now: Max and I chat away while driving to appointments. There are questions: "Why did you want to move to New Jersey? It's cold here! Los Angeles is warm!" Opinions: "New Jersey is disgusting!" (We got him the t-shirt for Chanukah.) Observations: "Ugh, all the leaves fell off the tree, I hate winter!" And pure teen outrage: "I didn't get to go to Los Angeles for my birthday").

Then: Wondered if he would be able to read. 
Now: This morning, Max kept pointing to the birthday sign on the kitchen table that his bro and sis left for him. Finally, I walked over and realized what he was saying: "There's no 'h'!'"

Then: I'd watch Max's movements like a hawk and wonder if they were normal. I'd watch other kids like a hawk to compare Max to  them.
Now: Max works around his physical challenges. He clutches plastic cups with all his might, fingers sometimes bent, but he does it. He sits on his butt to get down to our basement steps. If he needs to pick up a piece of paper or an object, he will try, try and try again until he succeeds. There's no need to compare Max to anyone because I know he is capable of doing things in his own way. That is what you call ability

Then: Freaked out when a relative suggested that our little guy smiled a lot because he was "simple-minded." Both because if was offensive, and because it struck a nerve. We knew that Max was at risk for cognitive challenges when the pediatric neurologist in the hospital told us he'd had a stroke; we just weren't sure what that meant. 
Now: Max's mind is anything but simple. He's sharp and observant. He's a whiz on iPads and other technology. His emotional IQ is sky-high, and if he sees me upset about something he'll ask, "Are you OK?" He is the person in our family who's best at driving directions and the one most likely to remind us all to grab a mask when we are leaving the house. Like any person's brain, his works in its own unique way. He tends to develop obsessions, then go all in on them. This started at around age 6, when he fell in love with the color purple. Fascinations with Lightning McQueen, car washes, firefighters, the color red, Las Vegas, and Los Angeles followed.  

Then: Winced when little kids would ask "Why can't he talk?" right in front of Max.
Now: When kids ask that, I turn to Max and say, "Max, tell them you can talk!" And Max will say something—"I can talk!" or "I want to move to Los Angeles!"—and grin. 

Then: When Max was around 5 I had to beg the school speech therapist to let him try a communication device, because she thought he wasn't ready. 
Now: Max shares thoughts in Zoom chat during virtual school sessions, and uses a speech app when class is in session. He types thoughts into his Apple Watch if his speech isn't understood. Max makes his needs, wants, wishes and All The Things known. 

Then: Wondered when Max would be able to reach milestones.  
Now: We pretty much know what Max is capable of, more than we ever dreamed. Experts will tell you that the younger years are critical for development, but I am here to say that even at 18, an adult can still 
still be full of potential and continue to make progress. In recent years, Max has learned to step out of a car alone. His handwriting has improved. He can often get a jacket on by himself. Just as great: He asks for help when he needs it. 

Then: Max's sensory issues meant we could only go to the same restaurant in our neighborhood and had to sit in the booth in the back, by the bathroom, every time. He wouldn't go to performances or movie theaters, either.
Now: The pandemic may be preventing him from going to events and movies, but nothing's stopping him and his dad from driving around in search of great restaurants with outdoor seating areas or good takeout. 

Then: Instead of enjoying the birth of our first child, we were sucked into the hell of the NICU. 
Now: Today, as I watched Max giggle as we lit his ice-cream birthday cake at lunchtime and his teacher and classmates sang Happy Birthday to him from his iPad screen, I grinned and felt his joy and mine, too.

We have so much to celebrate.

Wednesday, December 9, 2020

A visit to a new neurologist

After years of seeing the same pediatric neurologist—he first saw Max when he was two months old—we had to find a new one. Max turns 18 this week and the doctor advised us to find an adult neuro. This was not something I was gung-ho to do during a pandemic, but I asked around in my local Facebook group and a good number of people recommended the same person. Our pediatrician knew and liked him, too. He actually had available appointments. And so, I took the afternoon off work yesterday and off we went. 

Max was a bit perturbed that he was missing his virtual music therapy session, but was placated when I noted that he'd have a whole new person to talk to about his goal of moving to Los Angeles. I hoped that I wouldn't lose it when the doctor asked about his history. Sure enough, the second Dr. G. said "So, tell me Max's story," I welled up. It's been eighteen years and that time is still raw in my head and heart. I took a deep breath; I did not want to cry in front of Max.

And then it occurred to me: I didn't have to tell Max's story, he could.  

"Max, let's tell the doctor where you were born!" I said.

"New York City!" Max answered. 

And I filled in the hospital, the stroke and the seizures.

"But now you take medicine and you don't have seizures, right, Max?" I asked.

"Yes!" he said. "Apple cider!"

I explained that he likes to down his pills with cider, his beverage of choice. 

"MILK!" said Max.

"He also likes milk," I noted. 

"BEER!" said Max.


"He likes the taste of beer," I explained, lest our new doctor think that we were letting Max party during the pandemic. 

I mentioned that Max has had therapy since he was two months old. 

"I have Amanda now!" Max noted. (His music therapist.)

"Yes, we are going to try to reschedule," I said. 

At that point, Max decided to text Amanda himself on his Apple Watch. While he was distracted, I talked a bit about how grim the doctors had been about Max's prognosis and how far he's come. 

"He is so bright and he's got a really high emotional IQ," I said. 

"Does he read?" Dr. G.  asked.

"Yes!" Max confirmed, picking his head up from his watch. 

"He's a really good reader," I said. "Math is challenging. For me, too!" 

And that's how our visit went. I'd say something, and Max would give his two cents or opinion. He quickly informed the doctor of his plans to move to Los Angeles. 

"Why do you like Los Angeles?" Dr. G. asked.

"Steak!" Max said.

I explained he had a favorite steakhouse there.

"Fire Engine 27!" Max said. 

I explained he had a favorite fire station there, too.

Then we talked about school.

"Do you like your school?" the doctor asked.

Max legit loves it, but because he likes to act cool he said, "It's ohhh-kaaaay."

I smiled.

As the doctor and I talked—about what schooling was looking like these days, Max's history of seizures, his meds—Max continued to focus on his Apple Watch. I figured he had started to text Dave. 

"Is he social?" the doctor asked.

"Yes, very much so," I said. "Dave likes to call him The Mayor of his school!" and recalled how one time when Dave had dropped him off, he watched in awe as Max walked to class by himself and waved happily to every person who passed him by. 

I mentioned that Dave was his best friend, and they loved to go on eating adventures together. I pointed out that Max enjoys traveling. At that point, the good doctor asked if Max had been to Los Angeles. He did not know what he was in for.

"Los Angeles is my home!" Max said.

"You were born there?" the doctor asked.

"No," Max said. I explained that he meant he'd like for Los Angeles to be his home.  

"I need to look for a house there," Max said. "A BIG house," and he waved his hands in the air.

The doctor didn't understand what Max had said, so I translated. I noted that Max often uses a communication device at school (or the Zoom chat), but that outside of school he preferred to articulate his thoughts or spell out words on his watch. 

Finally, because we were seeing a neurologist and not a travel agent or realtor, I shifted the conversation to a discussion about a program Dave and I were considering for Max. An occupational therapist a few towns over is running a life skills program that meets for five hours at a time. Max had tried it out and loved it. There were only a few other students there, all socially distanced, and the practice was stringent about safety measures. Should I send him?

The doctor's response: no. Although Max's CP didn't necessarily put him at additional risk for complications from Covid-19, his blood-clotting mutations could be trouble as Covid causes clots. "The vaccine is on the horizon—hold out," he said, validating what we'd figured was ultimately best for Max. 

Dr. G. examined Max, checked his reflexes (excellent!) and noted that his feet were on the stiff side (standard for Max). Then he asked Max to take a walk in the hallway. I recalled the time an orthopedist had asked Max to do that and Max said, "Let's race!" He admired Max's walking, and my heart flip-flopped because after all these years, I have never taken it for granted. 

The doctor wished Max a Happy Birthday, and Max noted that he was planning to be in Los Angeles next year for his birthday. We strolled out of the office, arm in arm. We stepped outside the building. 

"It's SO COLD here!" Max announced. "Los Angeles is better!" 

Monday, December 7, 2020

Joy to the world as seen from our car

These days, driving around is one of the only things we're doing outside of our house. It reminds me of how when the kids were babies and I was desperate to get them to take a nap, I'd cruise the streets of our neighborhood. In recent months, I've been going on joy rides alone. Now we're doing it to look at holiday lights. 

Every one of us is happy to go. Max loves adventures. Sabrina's thrilled to be out of the house. Ben is generally wowed by twinkly lights (he has no less than five nightlights in his room). We have a list of homes in the area known for their lights displays, and the plan is to hit them all in the next few weeks. 

This is something we more or less do every year, but this year it feels like an escape...because it is. It's not easy for me to relax at home—there's always something to clean or de-clutter—but in the car I can just take in the gorgeousness and not think about Covid. 

We celebrate Chanukah in our house and don't usually do a lot of decorating, but if ever there was a year to get some twinkly lights, this is it. So I ordered Chanukah string lights for our kitchen (these, by Uratot, with mini menorahs) and some Chanukah window gel clings (these) and I put them up last night. 

Ben's entire face lit up when he walked into the kitchen. Sabrina thought the lights were cool, proving (at least in my mind) that I am actually not the world's most inept mom. Max smiled and said, "I want to move to Los Angeles!" because that is what he says 24/7. 

Last night I was up late, as usual, and I walked into the kitchen and the lights were blinking in the dark. It looked so pretty and for a minute, life felt peaceful and OK.

Friday, December 4, 2020

The Disability Blogger Weekend Link-up is back

What to do if you're new  

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

Like this: Love That Max: Another developmental milestone experts never mention

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, December 2, 2020

Hoarders Non-Anonymous

My dad was a hoarder before it was a thing. Plastic grocery bags, bars of soap from hotels, shoes (loafers in particular), rubber bands, glass jars, towering piles of papers and binders from his years as an accountant: They filled closets and cabinets in the apartment we lived in. My sister and I waded through them all when we cleaned out Dad's place in the spring of 2011. Among the bagfuls of stuff we donated to charity: about 40 Oxford shirts, still in their cellophane wrapping. 

I did and I didn't take after my father. I can't handle clutter (I regularly just close the door to Sabrina's room and our play areas), but I do stock up on stuff and stash it away. Costco has been our friend since we bought our house eighteen years ago. Max was a messy eater and our basement became paper-towel central; Dave and I often joked that we should invest in Bounty stock. Hoarding helped make life as a working parent more sane: If I had a stockpile of posterboard for projects, birthday gifts and cards, I wouldn't be scurrying to get them last minute.

Cut to the present. Hoarding's gotten a bad name, first with those shows about extreme hoarders and now because people are snatching up more than they need at Costco and grocery stories and not leaving enough for others. We already had plenty of paper goods before March, and I've tried not to overbuy as the months have passed though I totally get the urge: Surrounding yourself with stuff can be a comfort.

Back in Max's early days, knowing that we were fully stocked up with paper towels and over-buying developmental toys gave me rare peace of mind and a sense of control, especially when raising him felt like anything but. While there's nothing you can do to stop a raging pandemic, surrounding yourself with bags of flour and towering piles of t.p. is somewhat reassuring. 

Thanksgiving weekend, I started thinking ahead to holiday gifts. Another mom I know is planning to send t.p. as a present through Who Gives A Crap. !!! My plan is to shop local, which is so important right now; a lot of places are offering curbside pickup. And then, I remembered my attic stash. I'd gone to the dollar store last December for some gift bags. Something made me get hordes of them—dozens and dozens—along with tissue paper and cards. And there they were, in a plastic bin, awaiting me. One more thing to ease life during a not-easy time. 

In a couple of weeks, Max and I are going to drive over to his therapists' home for a socially distant gift drop-off. We'll also be leaving a tote with gift-filled bags on his school's front steps, where we pick up his weekly school paperwork. I'd like to think that Dad will be smiling down at a us from above. 

Monday, November 30, 2020

Another developmental milestone experts never mention

Max, as you may have heard, has his heart set on moving to Los Angeles. He likes warm places, and he has fond memories of few trips we've made there. Since he can't visit L.A. these days, he consoles himself by talking about it nonstop. He recently watched La La Land and has declared it to be his favorite movie. It also makes him feel good to go by L.A. time, three hours earlier for us. (If we tell him he has to go to sleep at 10:00, he'll say "No, 7:00!") Last week, Max figured out yet another way to bring L.A. to N.J.: Get into that California chill mindset.

My sister-in-law, Emily, is a yoga teacher who owns Sun Moon Yoga and Healing in Long Branch, NJ. She's been offering private classes during the pandemic, and runs small school pods, too. Max got it into his head that he needed a yoga session with her. He booked a date for Saturday, and texted the speech therapist who he usually sees on Saturday mornings that he needed to have his session with her on Friday instead. That worked out.

Saturday, Max and Dave took off for his yoga rendezvous. They met at Emily's sun-filled studio and for 45 minutes, they yoga-ed. Dave sent me photos and I literally could not believe my eyes. Max is used to yoga from doing it at school over the years. He'd never seemed that into it but there was Max clearly loving it. He even took off his Fire Department of Los Angeles baseball cap, which he typically only does to shower or sleep. 

Emily did a series of slower moves. She spoke about Los Angeles, the beach and relaxing. Instead of the "tree" pose they did the "palm tree" pose (much more L.A.). There was a bit of physical therapy thrown in there, too. 


I'd say that deciding you are going to have an L.A. state of mind when there's no other escape from the chilly realities of New Jersey and the pandemic is pretty darn smart. It's maturity. It's progress, the kind you'd never read about in a developmental book or hear about from a doctor. I know adults who don't know how to make themselves content like this. 

Max was grinning when he got home. For the rest of the weekend, he talked about doing yoga with Emily. Last night, he was hanging out in his Max cave (aka the basement) when he texted Dave that he wants to do yoga every Saturday and would that be OK?

This. Boy.

Wednesday, November 25, 2020

Really cool gifts for kids and teens with disabilities 2020

Because our kids and teens deserve especially great treats this year. 

A custom t-shirt

Max's favorite phrase is "Los Angeles is my home." His second favorite phrase is "New Jersey is disgusting." How could I not get him the t-shirt?! I bought the one above from Custom Ink and while I can't say it was a bargain, their customer service is exceptional. Within about 10 minutes of placing my order, I got a call from Cindy who pointed out that the color I'd picked might not show up so well. She helped me choose a different one. (For the record: We are expecting Max to wear this out in public only under a jacket, so as not to offend the many people who love NJ.)

A gift certificate to favorite restaurants

You support local business. Your child gets yummy eats. Win-win!

A bean bag chair

The microsuede bean bag chairs by Sofa Sack are highly rated and come in a variety of colors. Find them here

Scented play dough

Aroma Dough is eco-friendly, easy to manipulate and comes in fun scents including Tutti Fruity and Lollipop Lime. Find it here. Crayola makes a holiday-scented gift pack; find it here.

Also makes good scents: Aromatherapy shower steamers

For any teen who loves to shower! You place these aromatherapy shower steamer tablets in a corner of the shower and they just inhale and hopefully relax. Find this gift set here.

Soccer boppers

A super-fun way to get kids' arms moving—these slide onto their hands and they can bop you, their siblings or just the couch. Find it here.

A magnetic connector toy

Magnetic-based toys are great for STEM learning and fun, and can be easier to manipulate than other toys because the magnetics instantly stick. I'm a fan of the ones by Geomag; find this 35-piece set here. Some children may need help with grasping the balls. 

An inflatable sled 

The inflatable winter sled by Funboy has back support and room for two. Find it here

A great fidget

A flippy chain fidget with large-ish rings, like this one by Tom's, can be manipulated in any number of ways. Find it here.

A custom portrait

For any child or teen who loves to look at themselves in the mirror. It's easy: You just zap a photo and get a digital portrait emailed to you. I especially love the colorful ones by Etsy store Pittura Portraits.

An Echo Dot

The latest Echo Dot smart speaker has a clock, too. Find it here.


Super-fun, great for gross-motor and fine-motor skills and extremely bounce-tastic. Find it here.

A microwave pasta cooker

Kinda random but: If you have a teen with fine-motor-skill challenges who's a pasta maniac, like mine is, this silicone microwavable pasta maker by Lekue is easier to manipulate than a big pot with water. Find it here

Conversation cards

There are a variety of these cards available, but I like these new ones—TalkMore Cards— because they're positively worded and encourage empathy and social awareness. Find them here.

A gift box subscription

I've heard great things about Little Passports and KiwiCo. Or try a beauty subscription from Allure or Causebox (which offers socially-conscious products), or a grooming kit for your handsome young man from Birchbox

A pandemic pet fish

This is for any parent like me who just can't commit to a puppy. Betta fish are considered especially low maintenance.

A waterproof speaker

More shower fun for those shower-loving teens (or just any music-loving teen). We have this kind by JBL—available un a bunch of colors—and it's awesome. Find it here.

A gift certificate to a movie theater offering streaming

We recently discovered that one of our favorite haunts, Angelika Film Center in New York City, is streaming indie movies. See if any in your area are offering the same.

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

Tuesday, November 24, 2020

Pac-Man saves the day

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

These days, our household celebrates video games. They are an escape from reality, and while recognizing the inherent dangers of this, in the midst of a pandemic where the days are long and we often see a tad too much of each other, they are a welcome respite. 

Having a child on the autism spectrum presents unique challenges. For my son, T, managing his time with activities he truly enjoys and can learn from has not been easy. Therefore, his interest in video games has been awesome to watch. There are ground rules: no more than 45 minutes a day and he can’t play unless all his schoolwork has been completed. If we’re playing together – as a team or against one another – I’m a bit more relaxed with the time limit.  

I still have the Nintendo gaming system I played as a kid. Packed in bubble wrap, high on a closet shelf —indestructible to moisture or unexpected falls—my finest jewelry was more vulnerable. Years ago, I’d looked forward to the days T and I could play video games together, get our competitive juices flowing and show him that his mom had—and still has!—gaming skills. When I was a kid, playing video games was a time to unwind and engage in smack talk with my sister, in a strict household. Similar to books, video games provided an entryway to another world, and I remember feeling carefree and light.  

Vintage Nintendo!

As parents, we want our kids to experience the same things that brought us joy or peace or excitement or whatever feelings that shaped our childhood. It’s difficult for us to recognize that our kids may not seek out or value the same things we did. I didn’t anticipate that something that had provided me with endless hours of entertainment as a child would actually cause frustration for T, and me, too.

Difficulty with bilateral coordination and motor planning made video games challenging. I realized quickly that unwrapping my Nintendo gaming system was a bit premature. With a full schedule, would he find it relaxing and fun or would this be perceived as work? A secondary issue was his attention. Would he sit to play the game? I had not anticipated any of these roadblocks.   

So, as with many things, we made adjustments that let my son progress and built confidence. He started with a joystick, as it was easier to control; it ran about $30 on Amazon and came with 12 games. 

First T tackled Pac-Man, as the joystick was the only thing needed to play the game. To my delight, interesting conversations ensued about the ghosts. Which was the funniest? Why did they want to eat Pac-Man? We developed a strategy (don’t eat all the “energizers” or flashing dots all at once) and honed our attention skills (you can’t eat the ghosts when they transition back to their regular state)! 

We began cheering each other on, and then had fun trying to beat our personal best scores. Pac-Man saves the day, again.  

From Pac-Man, T moved onto Galaga and Dig Dug.  These games were a bit more complex as you needed to both control the joystick and shoot at the same time.  Yet more laughter, more cheering each other on.  T’s now having some success with Super Mario Brothers, but I suspect it doesn’t hold his attention as long due to the many nuanced bilateral hand commands needed like running fast, throwing fireballs and hunching down. He’ll get there. 

In the end, kids will be kids. There are certain things and activities many kids love: playing dress up, exploring playgrounds, swimming, riding bikes and playing video games. When my son received his ASD diagnosis, all the literature and research confirmed that communication and social interaction would be a challenge. I experienced this when he was a toddler, as he didn’t play with toys and interact with the other kids in the same way. His interests were limited and I was at a loss as to how to best introduce him to new things and experiences.  I knew it would be harder for him to connect with other kids if he didn’t share their interests. After all, aren’t shared interests the basis of most friendships?

Behaviorists will tell you to follow your kids’ lead and interests. But if interests are not innate or are limited, what is the best approach to nurture and develop them? As a result, typical kids’ interests often served as activity guideposts when T was younger, and still do somewhat. If there’s absolutely no interest, we don’t push it. But if there is, we witness his world opening up a bit more.  

For our family, it was never really about acquiring a new skill such as learning how to swim or ride a bike, although that’s always cause for celebration. It was about opening doors, nurturing connections and reveling in all the intangible benefits these connections add to our lives. These days, we can all use an extra dose of that.      

Find Jane on Twitter @JkimRites

Monday, November 23, 2020

One cure for pandemic stress: soak up the sunshine

I am on one of my car joy rides, just me alone, cruising around our neighborhood because: sanity. I get to a particularly leafy street and notice the sun streaming through colorful leaves, one of those moments that makes you feel like you are in a painting. I stop the car and stare. Just. Stare. When you're a mom, life is always a whirlwind but it's been even more so since March, when keeping up with everything takes everything I've got and I rarely take the time or have the time to just ponder and be still with my thoughts. This is probably because my brain is also working overtime to not let the weight of what is going on in the world oppress me. In the car, nobody's yelling "WHERE ARE THE SCISSORS?" or demanding a snack or asking to move to Los Angeles (Max, of course).  For now, I am in the moment and I relax and let it wash through me. 

I am sitting on our front steps, taking a rare break from working in the attic—some days, I am up there nonstop from 8:00 a.m. to 7:00 p.m. "I need to get out more" has a whole new meaning these days. Our neighborhood is even more quiet than usual, as it has been since March, and it's still unsettling. Sometimes it makes me think of scenes in The Walking Dead when the gang hits a new area and it's totally deserted. If zombies ever did show up, I'd think: 2020!!! I take some deep breaths and turn my face up to the sun.  

I am in the backyard with Dave and Ben, prepping for winter. It's one of our annual chores—put the deck furniture into the shed and store the outdoor toys and sports gear. But this year, I don't mind. It's 60 degrees on a November day and the sun is warming my body and mood. There is legit research on how uplifting sunlight can be—it boosts your levels of serotonin, aka the happiness hormone and improves sleep, among other benefits. Ben is giddy-excited; we have an outdoor cloth tube for jumping, and when we took a close look we realized there were slugs all over it. Ben collected them in a paper cup. We have yet to get a pandemic puppy; do pandemic slugs count? 

I am bustling around the kitchen, half-listening to Max's virtual class session. They are discussing Thanksgiving and what they are grateful for. His teacher is quite awesome. "Max, tell Mrs. A. you are grateful for her," I suggest. 

Max tells her that and she says, "Awww, Max, I am grateful for you, and every day when I see your smile. You bring sunshine."

And I look at my boy, sitting there at our kitchen table as the hellstorm of a pandemic whirls outside our door. Feeling gratitude for the blessings in your life is yet another cure for pandemic anxiety. And he beams at me and I soak up that sunshine.

Friday, November 20, 2020

The Disability Blogger Weekend Link-up: 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: When life gives you lemons, make kits

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, November 18, 2020

Children's books that give you all the feels

Something weird and cool is happening: Reading books to Ben at bedtime has become my new form of therapy. After a long day of grim headlines, escaping into books I've loved from my own childhood and cute new ones—and seeing Ben's reactions—is just what I need. 

Sometimes, we giggle together as we read Dragon Love Tacos, The Days The Crayons Quit and any of the Charlie and Lola books. Sometimes, when we read old classics like A Birthday for Frances and Curious George, I get the warm fuzzies. Sometimes, I rejoice about great messages, like when we read I'm Not Just A Scribble and we get to the page where he declares, "The fact that I'm different doesn't make me so bad. My colors are special, and my lines are just fine. If you'd give me a chance, we could have a great time!" 

Over the weekend, I had some rare time alone at home so of course, I organized. I waded through the bookshelf in Ben's room, plucking out books he'd outgrown and unearthing some we had yet to read. That included Love You Forever by Robert Munsch. It's a classic yet somehow, my parents hadn't read it to me and I'd never read it to Max or Sabrina. Womp womp. 

As you may know, it's a heart-tugging story about a mom who loves to hold her sleeping son in her arms at bedtime—when he's 2, when he's 9, when he's a teen. I had a little lump in my throat the first time I read the song she sings: "I'll love you forever, I'll like you for always, as long I'm living, my baby you'll be." I mean, it doesn't take much to get me going these days, but I'm also acutely aware that my children are growing old, fast. Max is going to be 18 in a few weeks. Sabrina is closing in on 16. Ben just turned 5. My baaaaaaabies....

At one point in the story, the guy moves into his own house.

"Why is he moving?" Ben asked. 

"When kids grow up and become grown-ups, they often move into their own home," I explained. I was careful not to over-generalize, as it's unclear what the future holds for Max.

Ben's face crumbled and a tear leaked out of one eye.

"What's wrong?!" I asked.

"I want you to be with me," he sniveled.

"Well, the good thing about moms and dads is that their hearts are with you all the time, even if you are not both in the same place," I said. "I really will love you forever!" 

Ben shook his head, sadly. 

"OK, I will be with you if you want me to," I said. 

That placated him. Then we got to the part of the book where the mother crawls in through her adult son's bedroom window and holds him while he's sleeping and I was all: That is weird. 

The next day, I was working in our attic when Ben trotted upstairs. We talked for a bit.

"I want to read that book again, the one about loving you always," he said.

I said yes. "It made you a little upset," I noted.

"Yes, because I was worried that you wouldn't be with me," he said. I was impressed he could articulate his concern. I hugged him tight. That night, we  read it again, only it was a somewhat different experience. Ben is in that little boy poop-obsession phase and he thought it was a laugh riot to insert the word into everything.

Me: "I'll love you for...
Ben: "POOP!"
Me: "...forever, I'll like you for...
Ben: "POOP!"
Me: "...always, as long as I live my baby you'll be."


Monday, November 16, 2020

When life gives you lemons, make kits

This school year, Max was supposed to be getting hands-on work experience. But: pandemic. Although his school building is open for learning, he's been virtual. That's been going well—his teacher is phenomenal, and Max is very responsive—but getting work experience virtually is quite the challenge. 

For the last couple of months Max has been doing data entry tasks using Google spreadsheets—he logs tallies for stuff like school attendance and lunch choices. He's really good at it, although he considers it boring. Can't blame him there.

Given that Max is likely going to be learning at home for a big chunk of the school year, I was hoping for some creative ways that would enable him to practice work skills and I asked the administration for suggestions. One of the teachers who coordinates the work experience program came up with an excellent idea: have Max assemble custom kits to approximate filling orders. 

Dave picked up the supplies from school. Max's first job: to put together first aid kits in the eight silicone bins provided. The school gave us cotton swabs, bandages and cotton balls. A card provided visual instructions:

Max also received laminated "order" cards, numbered 1 to 8, with different configurations of supplies.

Grasping the cotton swabs and bandages proved tricky, so Max worked on it during his OT session at school. Next up, he tackled a school supply order, and I helped him during my work lunchtime. Max had to divvy up markers, pencils and erasers. Those erasers were tricky little suckers, and grasping the slim pencils did not come easily, either. But Max would try, try, try again. And then, holding onto the items for dear life, he'd drop them into the bins. A few times he said, "Go upstairs!" As in: "Return to your office attic, Mom, cause I've got this." When he was done, he flashed me the biggest victory smile. Next time, I'm leaving him alone. 

We're picking up two more kits at school this week. One is a gift card kit; Max will have to divvy up assorted fast-food gift cards into bins. (Max, ever the hungry teen, is surely going to insist that we load money onto some of them and use them). The other kit will involve utensil assembly—he'll have to group spoons, forks and straws. 

Educating and engaging our children during a pandemic is a huge load to bear. Thinking out of the box and advocating for our children is more key than ever. As usual, it takes a village, and I'm seriously grateful for Max's.

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