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. 

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