He is so over my parental anxiety

"Max, you know to look both ways when you cross the street, right?"

Max sat in the passenger seat and stared stonily ahead, ignoring me. At his request, I was driving him to the fire station—his favorite place in town—so he could walk home from there. He'd done it once before, in October. There's a big intersection he has to cross on the way home, and it worries me. 

"C'mon, Max, answer me. You're going to look both ways, right?"

Max stared at me.

"Si!" he said.

I burst out laughing, and so did he.

"OK, Max, just be really careful about looking for cars when you cross that big street.

He didn't answer. 

Letting your adult child with disabilities grow into independence is partly a matter of their maturity, and partly a matter of your own. Max is sensible. He knows his way around the neighborhood. In fact, neighbors look out for him. Still, parental anxiety gets the best of me, especially my concern that he could trip and fall. Max is steady on his feet but it happens on occasion, when pavement is uneven.

"Hey, Max, what's your address?

 Max gave me another look.

"Los Angeles!" he said.

Again, I cracked up. He was mocking my anxiety, and really, who could blame him? 

I talked a little bit more about how cars sometimes speed through that intersection as he pretended not to listen, though I knew he was. I let him out of the car at the fire station, waved goodbye, took off and watched him IN my rearview mirror until I couldn't see him anymore.

A half hour went by. Forty-five minutes. I called his Apple watch; no response. I was about to get in the car when he showed up at our doorstep. He'd taken the long way home.

"Mommy! I want to take another walk!" he said after he used the bathroom.

"OK, see you soon," I said. 

I watched him head down our front steps, and I tried to let go.

The Disability Blogger Weekend Link-up: where did the week go?!

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).

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.

The Disability Blogger Weekend Link-up—spring-is-here edition

What to do if you're new  

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

Like this: The new normal and why we'll handle it just fine

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.

The new normal and why we'll handle it just fine

I spotted crocus poking out of the ground in our front yard this weekend, and I felt even more excited than usual to see them. Over the past year, I have been thrilled by the familiar and regular parts of life:walks at sunset, marshmallow pie at Thanksgiving, Halloween costumes, apple picking in the fall, dunks in the pool in summer. All still the same, despite the pandemic. 

I've craved normal, as we all have. I can't wait for a return to full school days, hanging with friends and family, hugging friends and family, vacations...and just roaming the aisles of Trader Joe's. With the vaccine making the rounds, normal is on the horizon. At the same time, I keep wondering just what a return to normal will feel like.  

Last weekend we went out to dinner for the first time in forever and as we drove home in the dark it seemed as if we were out on an adventure instead of cruising down the same old highway we've traveled for 18 years. It was both weird and wonderful. This week, I stepped inside a library for the first time in a year, took in the plexiglass partitions and the markers set up on the floor to keep people feet six feet apart and marveled that it hadn't felt like 12 months had passed. Weird and wonderful. 

My friend Wendy and I have been talking about the baby steps we'll take to ease back into public life—a trip to the store here, a meet-up with someone there. A lot of us have some form of pandemic PTSD. Those of us who have been quarantining will need to convince ourselves that it's OK to emerge from our cocoons, safety measures in place. While I'm not thrilled about wearing a mask indefinitely or avoiding parties and large gatherings, that's what it's going to take to keep protecting ourselves and others from Covid-19. And any state that says otherwise is defying the guidance issued by the Centers for Disease Control and Prevention, and putting its citizens at risk. 

Even as all this whirls around my mind, I reassure myself that as the parent of a child with special needs, I have experience in adapting to a new normal. Life after Max was born was anxiety-provoking, as things can be when you don't know what to expect. Nothing felt secure or certain. Nothing felt like it "should." But as time passed, I adjusted. Letting go of long-held perceptions let me accept reality—and appreciate and enjoy my boy for who he was. Not what I expected, not what I'd been used to, but: a new kind of normal. His normal. Our normal. 

This time around is a whole other experience, obviously, but there will be a similar shifting of gears and acceptance of a new normal. While parents of children with disabilities have had to contend with extra struggles during the pandemic, I think we are well equipped for re-eentry. Because as we are well aware, even if life as we once knew it now feels different, it can still be great. 

Distraction is the answer to parent sanity

Since Max was a kid, he's had varying passions—spaghetti, the color purple, Lightning McQueen, car washes, firefighters. Los Angeles is his most recent one, and we're going on a few years now. He is hell bent on moving there, as he reminds us often. And by often I mean every hour on the hour. He'll tell us that, he'll text it, he'll stand in our entry and weep because it's chilly outside and it's 80 degrees and L.A., as has happened recently. 

Max is old enough and bright enough to understand reason. But choosing to accept reason, well, not so much. He wants what he wants. (Who doesn't?!) And he is very, very stubborn. And he perseverates. Over the years, we have found that extended discussions involving said fantasies are the easiest way to keep him calm. The thing is, Max is 18 years old and I don't think it's fair or right to tell him that yes, he is definitely going to move to Los Angeles, what he'd like to hear. 

I have found ways around this by saying things like, "Oh, yes, I totally get wanting to move to where it is warm all the time!" and "You never know, someday you could live in Los Angeles!" I have also found that when Max keeps repeating "Los Angeles is my home," it helps to shift the focus of the discussion. It gets really tiring to keep talking about Los Angeles. No offense, Los Angeles. 

"Ohhh, yes, Los Angeles has great steak restaurants! What do you want for dinner tonight? Maybe we can grill steak!"  

"Los Angeles is great! It's fun to travel and I miss it. You know, I want to go to Hawaii when we are traveling again. Would you like to go to Hawaii? It's warm there!" 

"Los Angeles is nice. I think I'll plant some nice flowers in a few weeks, when it's warm. Max, spring is coming up! Do you know what day it is?" 

We all deserve our fantasies. We also all deserve some peace.

Distraction has come in handy for all my children over the years, but continues to be the most helpful way of managing Max's tendencies to perseverate. We got into a whole other topic the other day when we ended up discussing middle names over dinner. He asked about Benjamin's (Spencer). And he got it into his head that Ben's middle name is better than his (Grant). 

"I want a new name!" he announced. 

"I don't think you could have the same one as Ben," I said.

"I CAN!" he announced. 

I guess technically, he could. 

"So would you like your new name to be?" I asked.

"Fireman Max Spencer," he said. 

I pointed out that we already referred to him as Fireman Max. And then, I asked if he wanted to bring some treats by to our local fire department for Easter.

Distraction for the win. 

The Disability Blogger Weekend Link-up: Better late than never!

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: Tween shows as speech therapy, for the win

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.

Tween TV shows as speech therapy, for the win

My children have used up their lifetime allocation of screen time this past year, and I've chosen not to feel guilty about this. As it turns out, it seems to have done Max some good. 

Lately, I've been noticing him using more everyday expressions like "no way!" and "I'm bored" and "that's cool" and "you got it" and "you're the best." The other week, I went into my office in New York City just for the day and when Max texted to see where I was, I sent him a video. (He visited once and loved it.)

"You are kidding me," he responded. 

I had to smile; I'd never heard him use those words before. At first, I wondered where he'd learned the phrase, as it's not something Dave or I tend to say. Then this weekend, I was in the basement, aka the Max Cave. He can often be found down there and he sleeps there, too, his own private getaway. Victorious was on, his favorite show second only to Jessie.

As I folded laundry, I listened to the dialogue. And it dawned on me: Max has been picking up vernacular from tween shows. And anything that will help him better fit into a world that views people with intellectual disability as so very different is OK by me—it's another form of speech therapy! Max doesn't have friends from whom he can absorb conversational speech (and, er, attitude).

That said, Max has a Max-ism that I adore: "very so good." As in, "Los Angeles is very so good" and "that ice-cream is very so good." And when Max is excited about something, he has a unique way of pumping his fist in the air and shouting "YES YES YES!" While I'm glad for him to use common expressions, I'm all for Max being Max. He does not sound like most other people when talks–he speaks Max. And that is very so good, too. 

The Disability Blogger Weekend Link-up is good to go

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: Best back-to-school day ever

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.

Best back-to-school day ever

Max returned to in-person learning at school this morning after a year of being out. He had some of the usual back-to-school excitement, and some hesitation. Me, I had All The Feelings.

Max has always enjoyed school. He's been doing fine with virtual learning, and his school did a great job of putting together work skill kits he could practice with at home. But now that he's fully vaccinated, Dave and I felt it was time for him to be back socializing with classmates, getting in-person physical, occupational and speech therapy and doing his work skills live. There would only be seven other students in the class. We were OK with the bus, too—there would be only one other student on it. 

Max started  expressing some reservations this past week. Yesterday afternoon, he burst into tears. 

"It's not safe!" he insisted, and my heart sunk. 

Transitions have never been easy for him. Like all of us, Max had settled into a routine at home. And so, after months and months of making it clear to Max that we were quarantining to stay safe, we had to convince him that going to school was safe. We spoke about how the vaccine would protect him from getting very sick, and that he'd be wearing a mask to protect himself and so would everyone else at school. We told him that the awesome bus driver he'd had for the last several years would be back, and that there would be only one other student on the bus. We reminded him that he would finally get to meet his amazing teacher, see his old friends and make new ones. 

We had to convince ourselves, too. I've read up on the research on  the low risk of Covid transmission in schools. Anecdotally, I have heard the same from friends who have kept their kids in school. Still, it was a big mind-shift for us all. We have no regrets about keeping Max home since September, even though his school building was open—he is high risk for complications. But the vaccine changes everything. Sabrina is going back to school this week. So is Ben.

Max listened to us. He calmed down. Then he smiled and said, "Suit!" 

He was joking that he wanted to wear a suit for his first day of school. 

We prepared for his return by staying up too late (Max) and doing all of the forms at the very last minute (me) because: some things never change. Max picked out an outfit—his favorite Los Angeles sweatshirt and navy blue sweatpants. And we did his homework together, a video recording of how he spent his weekend. Max enjoyed reeling off the foods he'd eaten (sushi, ice-cream, spinach pie).

When my children have returned to school in September, it's always felt like a fresh start and a relief. Today, I felt like a whole other kind of fresh start and relief: We have made it through a full year of at-home learning (and at-home everything). Max going to school was the first normal thing that's happened to our family. 

After Max had breakfast this morning, he got out the plastic stand that he uses to prop up his iPad and put it on the kitchen table. It was a total "Maybe I can stay home?" play. But then, once his jacket was on, he kept looking out the window for the school bus. Never in my life have I been so happy to see that bus pulling up to our home. It was as if it had never gone away. 

We walked Max down the steps and he headed over to the bus with a huge grin. I chatted with his driver for a bit, so thrilled to see her, and said hi to the new aide. Then Dave and I stood there and watched it head off. 

"It's hard to believe it's been a year," he said.

"I know," I said.

The kitchen table looked bare without Max sitting there. The kitchen felt so quiet without listening to him talk with his teacher. 

It felt weird.

And all kinds of wonderful.