Friday, July 30, 2021

When moms lose their mojo and it's awesome

I dropped off school forms at the pediatrician's office the other day, which felt like a feat worthy of an Olympic gold medal. First of all, I remembered to do it. Second, the forms weren't even due for several weeks. Third, I actually made it out of the house. 

I had no illusions; it wasn't like I've gotten my mojo back. Just a few weeks before, I'd filled out the wrong birth year for our little guy in the online camp form, which I discovered when I called to ask why he wasn't in the group with his friends. 

I've lost my mojo. And it's been awesome.

Pre-pandemic, I was the typical nonstop working mom on a hamster wheel, mom keeping all the balls in the air, mom [insert whatever supermom cliche comes to mind]. I did great, as long as I never stopped—because everything would all fall apart, or so I thought. And then life as we knew it came to a grinding halt in March 2020. 

My work game stayed the same; my mom mojo was fully channeled into cleaning up and picking up after a family of five in the house all of the time, feeding them, keeping them safe and pondering how much TV would rot my children's brains. The GSD part of my brain entered survival mode; the part that stayed on top of schedules and forms, sign-ups for programs and getting kids to and from activities and playdates withered away because there was none of that.  

I had always been the type of person to stay up till midnight GSD-ing; now, I started crashing at around 10, zonked by the intensity of my days and anxiety over Covid. My usual drive to do things for my family and keep the house in order, uncluttered and fully working was consumed by keeping up with everything and accruing t.p., of course. I stopped caring about the bazillion little things I used to scramble to stay on top of, and just focused on existing. Made it through another day of virtual work, virtual learning and being cooped up with everyone? WIN. 

During our months of quarantining, I never found the time or motivation to do stuff like clean out the junk drawer, teach the children chess, adjust the wobbly mini trampoline in our basement, fix the grout peeling in a corner of the shower, organize the toys, get photos of Ben printed and hung (if you looked at our walls, you'd think we only had two children, not three), yada yada yada. Paperwork and clothes to give away piled up. Unlike seemingly everyone else I knew, I never even baked bread. (I have a long mental list of "If I didn't get around to it during the pandemic, I'm never gonna do it.") 

I was totally off my mojo, and so it's stayed. 

There's a bunch of mail lying on the kitchen counter
Old me: Open it before I crash.
New me: Lie on the sofa and watch The Crown.

We're running out of coffee pods/ketchup/seltzer/conditioner/tape____
Old me: Get it ASAP
New me: Get it at some point before we totally run out or soon after or let Dave deal or I guess we're just gonna run out.

My teen hasn't done her laundry in three weeks and her bedroom is a hot mess
Old me: Nag/do it for her.
New me:

That carry-on bag has been sitting in the foyer since Dave got home from a business trip
Old me: It would have been put away before it hit the floor.
New me: It's still there. 

Someone left the blender jar sitting in the dish rack with smoothie gunk on it
Old me: Clean it grumble-why-doesn't-anyone-else-notice-this-stuff-grumble-grumble-grumble.
New me: What should I binge-watch on Netflix next? 

The shrubs along our driveway are out of control

Old me: Squeeze in a trim at dusk and get eaten alive by mosquitoes.
New me: I could get used to that wild, overgrown look.

I bought a fairy garden kit for Ben a year ago
Old me: Feel guilty that I still haven't gotten around to putting it together with him
New me: 1) Stick it in the basement so it doesn't mock me 2) Reality check: He will never need therapy for that 3) "Want another ice pop?" 

There are five tubes of toothpaste open at once
Old me: "People! Why are there five tubes of toothpaste open at once?"
New me: [           ]

One of the recessed lights on the living room ceiling burned out
Old me: Replace the bulb the same day.
New me: Wave your hands in the air like you just don't care!

I'm pretty sure Max hasn't showered in three days
Old me: Bad mom. Bad, bad mom.
New me: I think I've read that's good for your skin? Or your hair? 

A groundhog has taken up residence under our shed
Old me: Get the pest control guy to relocate him.
New me: Look, guys, he's so cute!!!

Dave's towering pile o' t-shirts on his closet shelf is toppling over
Old me: Reorganize it grumble-why-can't-he-organize-it-grumble-grumble-grumble.
New me: Dave's towering pile o' t-shirts on his closet shelf is toppling over.

And you know what? My household is operating just fine, mainly because nobody else ever noticed most of this stuff except me. My family is fine—they have clean clothes, shoes that fit, food to eat, books to read, their favorite ice-cream. Me, I am doing more than fine: I'm less stressed and more well rested.

Turns out I don't need that exhausting and overwhelming go-go-go-get-it-all-done-now-now-now mentality for making our family and household function. Of course, there's still plenty of stress. But I'm not holding myself up to self-imposed standards of perfection nearly as often, struggling as much with parent performance anxiety or feeling compelled to tackle to-dos at 11:30 p.m.

Yesterday, I opened the fridge and saw a September expiration date on a milk carton. Typically, that fills me with dread—summer is ending soon, the back-to-school tornado will soon be upon us, yikes. But for once, I wasn't fazed. 

I spotted some milk residue on the shelf. 

I shut the door. 

Image: Getty Images

Saturday, July 24, 2021

The Disability Blogger Weekend Link-up: snag a spot!

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: Tough-love parenting, 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.

Friday, July 23, 2021

Tough-love parenting for the win

Max is usually grinning his head off, dancing or doing both in every photo and video from camp. I'd been eagerly awaiting letters from him, and a couple recently arrived. Mainly, he wanted to find out when we'd next be visiting Los Angeles and he wanted me to mail him his UCLA sweatshirt. Max may be at camp, but he left his heart in Los Angeles, the place where he'd like to live.

I didn't recognize the handwriting. Hmmm. 

Max has, in recent years, been insistent on writing out classwork and homework instead of typing it. And his handwriting has really improved. I knew what was happening at camp: Why should he go to the trouble of writing if one of his awesome counselors could do it? It is entirely possible they had offered, and he took them up on it. Or maybe they assumed, because in the past counselors have written them for him. Or maybe he asked. Heck, we all get lazy during summer. 

Summer school is traditional for many students with intellectual disabilities because regression can be an issue. The academic kind has never been a problem for Max, one reason why we're fine with sending him to camp instead of school. But now, I wondered if a different kind of regression was happening. Max has been on such an independence surge for the past couple of years. And while maturity for him also means asking others to lend a hand when he needs it, I wanted to make sure he wasn't being coddled. 

This is the line I walk as the parent of a young adult with cerebral palsy. It happens at home with tasks, too, where it's natural for Max to be codependent...if we let him. Max, you can put your clothes in the hamper. Buddy, you can brush your teeth. 

The staff at the camp are beyond nurturing and caring; it is pretty much the only overnight camp program we found that was willing to take campers who needed assistance with life skills such as dressing and showering. They're super-encouraging, too (check out this video of him shooting hoops), and want what's best for Max. I just wanted to make sure they kept in mind that letting him do stuff himself is good for him. I texted the amazing program director to say that Max was capable of writing his own letters, and to encourage the counselors to have a can-do approach. 

This could very well mean I won't be getting more letters, I guess—but I'm feeling pretty confident that anytime soon, we'll be getting a note from Max asking when we're going to L.A.

Friday, July 16, 2021

The Disability Blogger Weekend Link-up is hot

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: This video just made my whole summer

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, July 15, 2021

This video just made my whole summer

"You can do it!" shouted his awesome camp supervisor.

And Max sure did. 

Tuesday, July 13, 2021

Why we need more cakes like this one

The woman standing at the Shop 'n Save bakery counter needed a cake for a celebration. A friendly face greeted her: Andrew, a young man with disabilities. He informed her that he couldn't write on it, she relayed in a Facebook post that went viral, "because he was nervous that customers have not been so nice to him and that it would be messy." 

My heart ached when I read that. Earlier in the day, I had reposted a plea for job opps from the principal of Max's school on my Facebook page and a few local ones. Max is in a program through which he's supposed to get work experience. It got suspended during the pandemic and Max was home for the year, anyway, until he got vaccinated. He managed to get some skills practice at home thanks to the ingenuity of the program director, but he and his fellow students have been missing out. Max was really eager to try out jobs.

During Max's recent IEP (Individualized Education Program) meeting, I asked about the job situation for the next year and it became clear there was a dearth of them. I wasn't surprised given that the pandemic has shut down a lot of small businesses, but I was concerned. I emailed the principal and mentioned that while I had every faith the school was doing what it could to secure jobs, this would be a good time to post about it on their Facebook page, send out an email and ask parents and the community to spread the word.  

The principal offered a list of tasks that students usually do well with: mailings, shredding, sorting, stuffing, stocking, simple data entry, fronting shelves, basic building maintenance, greeting people at stores, wiping tables, setting tables, sweeping, folding, assembling and packaging. He noted potential types of businesses, including offices of any size, retail stores, children's museums, gift shops, libraries, restaurants and animals shelters. 

It was sobering to consider Max's future in the work world. People with disabilities (PWD) have historically had fewer work prospects than people without disabilities, and Covid has disproportionately affected them. Last year marked the lowest unemployment rate for PWD in seven years, reports HR Dive

My spirits lifted as I continued reading the post. The woman told Andrew that he most certainly could write on the cake. "It will be perfect!" she reassured him. "I gave him a little boost by telling him that he can do ANYTHING he puts his mind and heart into." 

Andrew headed to the cake decorating table at that supermarket located in nowhere else but Fairchance, Pennsylvania. He turned around and asked Cheryl what she wanted the cake to say. 

"Celebrate together," she told him. 

He said it might take a while. 

She said that was OK.

Are you feeling all the feels? I am. Because encouraging people like this woman are not the norm, as I know all too well from raising my amazing young man with disabilities. 

If you are not the parent of a child with disabilities or don't have a family member with disabilities, perhaps you've gotten misty-eyed because it is such a feel-good story. But the awwww factor is not the point. The challenges that PWD face in the workforce is

This story would not be a thing if people with disabilities were a typical part of the workforce. 

It's pretty basic: If more people with disabilities had jobs, then PWD doing their jobs wouldn't be newsworthy. 

While some people with disabilities have fewer job options because of their physical or cognitive realities, mostly they are limited by closed-mindedness, stereotypes and prejudice. 

Andrew finished icing on the message, boxed the cake and brought it over to the customer.

"Do you like it?" he asked.

This story wouldn't be a big deal if people were more open-minded about those with disabilities.

The vast majority of people do not get that people with disabilities have plenty of abilities. Some can do jobs every bit as well as people without disabilities, it not better. Some, like my son, may take a little more time to accomplish tasks and require support and more patience and understanding. Some may not do things in the typical way, and the results may not always be up to perfection norms. But does perfection that conforms to societal standards always need to be the ultimate goal?

I don't know anything about Andrew's job history. Perhaps decorating cakes is something he always wanted to do and the store gave him the chance. Perhaps he is stubborn, like my Max can be, and chose to work without adaptive devices or other assistance. Maybe his skills were still coming along with help from a job coach. But I say, take another look at that cake and try to rethink your ideas of what a "perfect" cake is. Take another look at that cake and rethink your ideas of what a "perfect" worker is. Take another look at that cake and rethink your idea of what a "perfect" person is.  

Hopefully, this story doesn't end when you click off this post. 

Maybe you can be more patient and encouraging when you encounter a PWD in a store, at a business or wherever. Maybe you could let the manager or company know that you applaud them for hiring PWD. Cheryl planned tell the manager about her great customer service experience. I did the same last year when a resort we were at had a young man with cerebral palsy checking in people in at the pool.

If you own a business, company or nonprofit, consider affirmative action—it applies to people of all abilities, not just gender, race and sexuality. For starters, you could reach out to local schools for students with disabilities, programs and nonprofits that promote the employment of people with disabilities. You could kick off a discussion on your local business Facebook page to find out what other businesses have been doing and at the very least, get people thinking. You could make a difference in your community, and to people like my son and Andrew.

"I don't just like it, I LOVE it, Andrew," the woman replied to Andrew. "It's ABSOLUTELY perfect. See, just when you doubted yourself, you did it, right?!" 

And he said, "YES!" 

Image: Facebook 

Friday, July 9, 2021

The Disability Blogger Weekend Link-up took a break but now it's 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: Life is better at camp

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, July 7, 2021

Life is better at camp

Few things make a parent happier than knowing that your child is having a good old time at camp. This year should have been the summer to make up for the lack of camp in 2020 (I feel like the universe  owes all of us, right?!) but I was just a little dubious given Max's infatuation with Los Angeles. The smaller challenge: he thought the camp food isn't great (read: they don't offer steak or sushi). Still, in recent years he's had the time of his life there.

Max got an L.A. fix courtesy of Dave before he went off to camp. And yes, I felt good about Covid safety because he's vaccinated, every single person at camp got tested before they arrived and there will be more testing. Within a day of Max's arrival, we had glorious proof that he was ecstatic: Facebook photos and videos of Max gleefully dancing up a storm. Dave watched the videos again and again. "Wow, he is booogeying!" he said in awe.

It's been said that some of the best learning happens outside the classroom. That couldn't be more true for camp. Besides perfecting his dance moves, Max gets to try new activities, socialize with peers in a way that he doesn't otherwise, regularly practice swimming and flex his independence.

He can practice flirting, too (here he is on a boat, sandwiched between two cute girls)

Therapies at camp are of the spontaneous kind—look at him throwing his hands in the air! His school PT would be impressed. 

I am overwhelmed with gratitude for the camp staffers who made camp happen, no mean feat. I am forever indebted to the director of the program, Orlee, who accepted Max into camp when no other camp would and didn't think twice about the fact that he needed a hand with self-care. I am overjoyed to see this guy living his best summer life. What we'll do with all the money we are saving on sushi, steak and flights to L.A., I'm not yet sure.

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