Monday, June 18, 2018

There is no age limit on pretend play


Two of my children were driving the other day. Max was steering the minivan as Ben maneuvered a pirate ship in our foyer. They're thirteen years apart and yet, pretend play is important for both of them.

Max has been driveway driving for years now. Sometimes, I sit in the passenger seat and he takes me to pretend places. His destination of choice is always Orlando, where he plans to move to. (I don't consider his constant discussions about moving there imaginative, because he has pretty much convinced himself that he is going to live there.) Another favorite play activity: listening to fire truck videos on YouTube and making a siren sound along with them. Several years ago, one of Max's occupational therapists used to engage him during sessions by getting him to put out fires.

Ben likes to lie on floor and roll around his pirate ship, his toy trucks and cars, water bottles, whatever. He does this at home, and at restaurants we're at, too. "Here comes the tunnel!" he'll proclaim. "Beep! Beep! I'm coming!"

Experts say imaginative play is a critical part of child development. It enhances thinking skills and creativity. It can increase language usage. When children use toys for scenarios involving other people, it can help boost communication, problem solving and empathy. Pretend play also builds confidence because children discover they can be who they want to be and do what they want to do just by pretending.

At fifteen years old, Max is still developing, and pretend play is as good for him as it is for his little brother. I realize that most boys his age are gearing up to get a driver learner's permit. I'm not sure if driving is in the cards for Max. But when he's behind the wheel in our driveway, he is in control and loving life.

Friday, June 15, 2018

The Disability Blogger Weekend Link-up means it's time to share a post


What to do if you're new here

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 invisible labor dads of children with disabilities do

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Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, June 14, 2018

The invisible labor dads of children with disabilities do


Moms tend to take credit for a whole lot. This is because we do a lot. Me, I am the person who basically keeps our household running, who clothes our children and schedules their appointments, activities and carpools, who organizes their school stuff and so much more, as I detailed last Mother's Day. Research, in fact, found that women handle the bulk of intellectual, mental and emotional labor of childcare and household maintenance—so-called invisible labor.

Of course, this isn't true of all parents—especially those who are raising children with disabilities. Dave and I are equally likely to pitch in with the physical, emotional, social and mental care of Max. And I will admit that Dave doesn't always get full credit from me, or society, for all that he does as the father of a son with disabilities.

Dave may not know Max's shoe size, but he is there to slip Max's orthotics on his feet in the morning. Dave may not know all the teachers' names, but he is always there to work with Max on writing up his weekend news report. He may not notice when Max is almost out of toothpaste or shampoo, but he helps with showering. This, too, is invisible labor. Where's the documented proof of that?

And then, there are the unique responsibilities that come with raising a child who has intellectual disabilities or autism. This can involve anything from listening to a child perseverate on a topic; indulging fixations with Minecraft, car washes, fire trucks, trains, traffic lights, bus timetables or just about anything; and generally catering to that child's unique psychological makeup.

Keeping children with disabilities calm, content, comforted, occupied and happy is a unique kind of mental and emotional care—one that our culture largely fails to acknowledge dads do. 

In our family,  there is one significant responsibility that Dave handles weekly: a trip to Home Depot to shop for the fantasy house Max wants to buy.

When we visited Jamaica in December, Max got it into his head that he was moving there. Once we returned from our trip, he found a beautiful house online that he informed us he was moving to. Then he and Dave went on an errand to Home Depot one weekend, and Max decided to pick out appliances for his fancy new house. After that, Max wanted to visit Home Depot every single week.

Although Max has recently changed his fantasy destination to Orlando, Florida, his HD visits remain the same. First, he grabs one of those carts that looks like a car and pushes it over to Appliances. He gazes fondly upon his objects of desire, including a Samsung refrigerator with a screen that shows the interior of the fridge and a Whirlpool microwave. He hits the flooring department to ogle dark brown tile that looks like wood. He hasn't yet decided on cabinetry or a washer/dryer (tough choices, to be sure). He notes that he is going to need a very large moving truck, as evidently he would like to support our local Home Depot and stock up his future Florida home there.

Dave typically takes Max to HD on Sunday evening, after the two of them put out the recycling. Sometimes, Ben comes along. It's never me that Max wants, just Dave. Are there any other number of things Dave would rather be doing than wandering around the appliance area? Um, yeah. But he knows that Max loves these trips. And so, week after week, he heads to Home Depot, without complaint.

I may keep up with a whole lot of to-dos, yet Dave puts a lot of time and effort into an equally important one: keeping Max happy, whether he's taking him to Home Depot, playing kickball in our backyard, unrolling the avocado roll at the sushi restaurant and mashing it up so Max can eat it, letting Max sit in his car and pretend to drive it or typing up a list on Max's iPad of what he'll do at Disney World when he hopefully-soon-pretty-please gets to go there again. Keeping our children happy is, perhaps, the ultimate to-do. It's a form of labor invisible to most everyone but me (and the Sunday staff at Home Depot).

In absence of a Father's Day card that reads, "I love you for taking our son on joy trips to Home Depot every single week," I'll just proclaim my appreciation. Here's to you, love, and all the dads out there for all that you do for our children. Maybe we moms don't say it enough, if ever. Perhaps we get on your case too much about not putting your dirty clothes in the hamper or leaving empty milk cartons in the fridge. But we appreciate you. We need you. Our children need you. And we are all are so very lucky to have you.

Wednesday, June 13, 2018

On trying to be a superhero to your children: Max sees Incredibles 2


I am a crappy mother. Why? Because I insisted that Max see a screening of Incredibles 2, even though he resisted. Only now he's saying it's his new favorite movie.

Like me, Max loved The Incredibles. He's been watching sneak peeks of Incredibles 2 since the official trailer came out on YouTube in April, and literally counting down the days till its opening this Friday. And so, last month I reached out to a contact at Disney•Pixar I'd met years ago at a conference, and asked if there might be a screening we could attend. There was—on Monday.

I was gleeful when I announced this to Max.

"No!" said he.

Wha?!

"Max, don't you want to see Incredibles 2 first, before everyone else?"

"I said no!" 

The thing is, Max had his own plans to see it. He was going to head to New York City, sleep over at my sister's house and hit the theater with her and my niece. And when his school offered an afternoon trip to see it next week, Max wanted to sign up for that, too. So in his head, he was already set. And my exciting offer to see it in preview just wasn't so exciting for him, although Sabrina was seriously psyched. 

You'd think I'd know better by know than to project my own idea of fun onto Max. A preview! Of a major movie! How could he resist?! Sometimes, though, you get so excited by the idea of surprising your children that you push reality aside. And the reality of how Max's brain usually works is this: he creates plans, then sticks with them. And seeing the movie before it opened wasn't part of his plan.

I kept asking Max if he was sure he didn't want to go. He didn't. I was bummed. Lately, though, Max's mindset has become a little more flexible. I wondered whether he would change his tune, and sure enough, last weekend he did. Y-e-s, he wanted to go.

And off we went on Monday night to an AMC 30 minutes away. Max wanted to sit next to Sabrina, not me (#teen). He giggled throughout the movie, especially in scenes involving Jack-Jack; the baby reminded us all of Ben (well, other than his ability to transform himself into a fireball). When the family got a new place, Max leaned over excitedly to say "They moved!" because he wants to move (to Orlando).

The plot was amusing, clever and grip-your-seat thrilling. The characters were funny and relatable. Helen Elastigirl Parr was her usual feisty self. Bob Mr. Incredible Parr took a turn as a pooped out stay-at-home dad when Helen got an Elastigirl gig. (Sabrina and I both poked each other when, as Bob struggled to help son Dash with homework, he griped about how math isn't done like it used to be—that's our story, too.) Frozone was around, with his off-the-camera wife giving him her usual earful. My favorite character, Edna Mode, babysat Jack-Jack and made him a cool costume. Together, the family fought evil, continuously sparring over who should hold Jack-Jack as they zoomed around.


When the movie ended—and it was so good none of us wanted it to end—Max reminded me that he was going to see it two more times! In the car ride on the way home, he and Sabrina named their superpowers. Max said he was strong. Sabrina said she could text with amazing speed. I decided to not ask what they thought mine was, because Sabrina would have surely said "nagging."

We talked about what happened in the movie, and Max kept saying a word I didn't understand. Then I got it. Some people in the movie (non-spoiler alert) had come under a spell, and Max was saying they'd gotten sick and then better. That was his understanding, and that's the magic of movies like this: they can work on many levels. Then Max again pointed out that the family had moved to a really big new house, and he was also going to move to a big house in Orlando, and he threw up his arms for emphasis.

"Good movie!" Max said. He again noted he'd be seeing it two more times.

"Aren't you glad I kept asking you to go?" I asked.

"Yeah!" he said.

And I felt super-satisfied.


Image source: Pixar

Tuesday, June 12, 2018

Including children with disabilities: This teacher hiked with her student on her back


How to enable a little girl with cerebral palsy to participate in her class's two-day camping trip? Chicago special ed teacher Helma Wardenaar was determined to find a way and boy, did she ever.

She'd been working with Maggie since kindergarten, reports ABC 13 News. Maggie uses a walker or a wheelchair, neither of which was a realistic option for hiking. "We thought it was super important for her to be there and be able to do everything the other students were doing," said Helma, director of student services at the Academy for Global Citizenship.

Helma set her mind to figuring out a solution. She considered borrowing a friend's pony for Maggie, but was told they weren't allowed in the forest. She checked out backpack and carrier options at REI, but found no good options. A wheelbarrow? Nope, not sturdy enough.

Then she got a call back from the REI staffer, who'd found a new backpack-like carrier called the Freeloader, which holds children between 25 and 80 pounds. Lacking a school budget for such things, Helma paid for one out of her own pocket. And then, she toted Maggie around on the trip as the class did the sort of stuff kids do on hikes: identify birds, check out animal tracks and look for beaver dams.

Carrying around a 62-pound child on trails is no mean feat, but Maggie helped. "When she noticed I was huffing and puffing, she even gave me a little massage on my neck," said Helma. "Then she started singing as a distraction."

We've all met teachers who have gone above and beyond, but this one's willingness, determination and selflessness stand out. Too often, our children with disabilities aren't able to participate in events and activities because people can't envision a way to include them—or aren't willing to. Inclusion is half mindset, half figuring out the logistics. Here's to teachers who make things happen for our children. Helma Wardenaar, the world needs more people like you.

Image: ABC 13 video

Monday, June 11, 2018

Living his best life


When Max was a newborn, his neurologist told us to expose him to as expose him to as many experiences as possible to help expand his mind. This was challenging when he was little, because his sensory issues made him afraid of crowds, noise and new places. Yesterday, it was clear just how far Max has come. 

All morning, he kept saying he wanted to go to New York City. On his wish list: a visit to a fire station, and steak. His usual preference is Dave for these joy trips, but Dave was zonked. So: Mommy and me it was. I booked a reservation at a steakhouse and off we went. The train ride there alone was a thrill.

Max was in charge the second we stepped foot in Manhattan. He directed us to the local fire station, where we met Firefighter James. When he asked me how old Max was, I said, "Ask him!" and he did. Max made conversation: He noted his plans to move to Orlando, because Disney World is there. He asked James if he'd been to Disney World. He asked if there had been any fires that day. 



After Max and I walked a few blocks, he asked to take the bus uptown. I hadn't realized that the Puerto Rican Day Parade was happening, and when our bus got rerouted we got off to check it out. But first, Max spotted a few fire trucks on a street investigating a smoke situation. Bonus!  


As we watched the parade, Max waved at the people on the floats. He asked if he could be in the parade, and I said those people had permission. He accepted that, notable for the lack of resistance. 

Meanwhile, Max decided he needed a haircut before his steak extravaganza, so I googled a barber shop by the restaurant. We took a taxi there (Max hailed it), and he sat still for the better part of a half hour as the stylist lopped off his mop. This, too, was major progress—haircuts used to make him wail. 


Max looked pretty suave when we arrived at the restaurant. He ordered creamed spinach and mashed potatoes with his steak. I cut it up into pieces and he dug in, happily. We chatted about the end of school and summer. "When You Wish Upon a Star" came on the instrumental music playing in the background, and his face lit up. Then the waiter gave me a glass of Pinot Grigio on the house. Bonus!


It was a great day, and not because of any planning I did—it was all Max. As is often the case, there was an extra layer of awesomeness because I was so aware of Max's progress and maturity. 

As we walked around, I'd held onto his arm, in part because I wanted to make sure he didn't trip. He's pretty steady on his feet but uneven pavement can mess up his balance. At some point, Max broke free. "No, thanks!" he said. And we walked on, just any mom and teen enjoying a day together.

Friday, June 8, 2018

The Disability Blogger Weekend Link-up: Join the crowd


What to do if you're new here

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: There's nobody missing from this prom photo

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, June 7, 2018

A student with autism couldn't attend graduation, so they brought graduation to him


High school senior Jordan Smith was ready to graduate from Spalding High School in Griffin, Georgia. Because he has autism and sensory issues, and crowds and loud noises freak him out, his family decided he should skip the ceremony, reports the Atlanta Journal Constitution. But his teacher, Dana Jett, had other ideas: She organized a private ceremony for him. As she said, "Jordan's effort, hard work and perseverance are worthy of recognition."

As a parent of a child with sensory issues, I was touched by what this teacher did for her student. As a parent of a young adult, I also hope she OK'd it with him and involved him in the planning. Otherwise, this ceremony would have only had meaning to the people who put it together, pretty much defeating the seeming purpose of it. That's not accommodating, it's exclusionary.

Max has been the beneficiary of much goodwill over the years. But as he's getting older, I've become aware that he should have a say in how he is treated in matters big and small. Last week, before prom, a nurse at his school emailed me telling to send in Max's adaptive cup and utensils. Pretty standard. I asked Max if that's what he wanted; he can drink out of standard cups and use standard spoons and forks, and I thought that he might just want to do that at prom. He did want to bring in a paper cup, but he wanted to use the utensils there. This wasn't such a big deal, but that didn't matter; he deserved to decide.

Me, I've struggle with well-meaning gestures, like when that woman at Dunkin Donuts gave him free donuts. I don't want people to do things out of Max's disabilities, because they are not to be pitied. But, heck, if he himself makes a conscientious decision to take those donuts, fine. And if he's offered an accommodation but would rather do his own thing in his own way, even better.

Image: Screenshot/YouTube

Wednesday, June 6, 2018

Time is measured in holidays, birthdays and contact lenses


"The days are slow, the years are fast" is one of my favorite book lines ever, from Gretchin Rubin's The Happiness Project. It is so true. The kids' birthdays and holidays make me particularly aware of how quickly they're growing up. Facebook flashbacks, too. With Max, comments from people who haven't seen him in a while make me aware of his development; the consensus is that his speech is getting easier to understand.

And then, there are my contact lenses, the most regular marker of just how fast life goes by. They come 30 to a box. And every single time the box runs empty, I can't believe another month has passed. Wasn't I just grabbing another box yesterday from the closet and putting it beneath the sink?

Women with adult children like to tell me, "Someday, you're going to miss these days!" I get that. I love raising children. (Um, most days?) I love the family life we have. But then, it's hard to imagine I'll ever miss the whirlwind of to-dos, chores, tasks, appointments and staying on top of everyone and everything (see: I am the person who notices we are running out of toilet paper, and I rock). Someone should invent an app that automatically keeps track of all the stuff moms do in a given day so we could hold it up to our darlings and say "SEE?!"

Ironically, keeping up with family duties at times also means I get too busy or distracted to fully savor them. And suddenly, there I am again, breaking open another box of contact lenses. Sabrina is looking more and more like a young adult. Ben is asserting himself in all sorts of new ways. ("No bedtime! I sleep already!") Max has moved on from YouTube fire truck videos to ones of people loading moving trucks (he plans to move to Orlando just as soon as possible).

I haven't found any magic solution to slowing life down. There's definitely no app for that. What does help is conscientiously making myself be present. No thinking about what I have to get done that morning/afternoon/night. No checking email or Insta. Just being in the moment, what shrinks refer to as "mindfulness." It's the core of meditation (something I've always sucked at) but I've found that if I don't put pressure on myself to do it, it happens. Because the last thing I need is another to-do.

Last night, Sabrina, Max and Ben were on the couch, shoving each other and trying to claim their territory. It was hardly a special moment and yet, it became one. Because as I sat there watching them I started thinking how great it was that they more or less got along and how cute they all looked and how happy they were and how lucky I was to have them. And just for a few minutes, time stood still.

Tuesday, June 5, 2018

When do you help your child with disabilities interact with other children?


We were at a jam-packed barbecue on the weekend with kids of all ages running around. Some were jumping on pogo stocks. Ben and his little buddies were all over the climbing gym. A few kids were playing with a red wagon on the driveway, and Max got it into his head that he was going to pull a bunch of them around.

One of the kid looked at Max, said "Uh-uh" and jumped out. That left two boys. They looked to be about 8 years old. Max was having trouble moving the wagon off the embankment it was on, and I was worried that the cart was going to overturn. I'd been standing in the background, watching from behind a gate, but I jumped forward and said, "Here, Max, I'll help."

I hadn't wanted to get involved. I wanted Max to interact with these children on his own. As soon as I pulled the wagon forward, I walked back to the gate. But as I watched Max pull the wagon, struggling hard, it started sliding down an incline leading to the road. I didn't want it to go zooming into the street so again, I dashed out of the gate and ran down to stop the cart.

"Maybe this isn't a great way to play, and there's something else you guys can do!" I said. But the two boys climbed out and walked away, leaving me standing there with Max. He said, "Awwww."

I felt awful. And helpless; what should I have done? I wanted Max to be independent, but I didn't want to risk those kids getting hurt. Of course, children playing together unattended can (and do) get their fare share of boo-boos—I just wanted to make sure my teen wouldn't be the cause of that.

Max doesn't often hang with peers his age who don't have disabilities. At gatherings like this, he tends to gravitate toward younger children, who sometimes don't know what to make of him. At our recent neighborhood block party, Max and I met a little boy.

"Why does he talk like that?" he asked as Max stood there.

"People talk in different ways, and that's Max's way of talking—right, Max?" I said. And to the boy: "He does understand what you're saying." Max is nonchalant about exchanges like this. I do my best to facilitate, so that Max is included in the conversation and the child can begin to get to know Max.

Yet conversations are one thing; playing is another. Trying to look-after-but-not-look-like-I'm looking-after Max as he plays with younger children is tricky.

That day at the barbecue, I told Max that maybe he could pull Ben around the wagon. Ben refused to leave the climbing gym but the next day, after I got home from work, we took Ben out in his little car and Max did the pushing. It wasn't the answer I was looking for, but he enjoyed it.

Image: Flickr/James M. Turley

Monday, June 4, 2018

There's nobody missing from this prom photo


Friday night was Max's first prom. He'd been looking forward to it for weeks. "ROM!" he called it (he can't yet say "p's.") The plan was for me to drive him there, walk him in, then leave.

I took a few photos before we left. As Max stood in front of the stairs, they suddenly seemed a little empty. His suit lapel looked a little bare without a corsage pinned to it. Max doesn't know that people take dates to proms, and he didn't seem to care. Me, I get a little melancholy at life milestone moments like these. I rarely have those what-if pangs anymore—as in, what if Max didn't have intellectual disability. But standing in front of the house on prom night and taking photos of him looking so handsome and alone gave me pause.

My head knows not to feel sad that Max doesn't fit into the cultural norms: he has a good life, he is happy, he is content with who he is. My heart, not so much.

When we pulled up to the catering hall, Max spotted his friend J and squealed. I let him out of the car and he ran over and gave her a hug. I parked and found him inside, giving people high-fives left and right. "Are you Max's mom?" two boys asked, and suddenly I understood how celeb handlers felt.

I asked Max to take a photo in front of the Hollywood themed step-and-repeat. A classmate wanted to be in one with him. Right before I took the photo, she kissed his cheek. Max cracked up.

"Did you just kiss Max?!" his teacher asked. Yep, she had. What happens at prom stays at prom!

Then another student approached. "I want to take a picture with Max!" he declared.

Max settled down at the table with his classmates. A waiter set a plate of salad down at his place. I was about to say "He doesn't eat salad!" but I held back. Who wants their mom sending back food at prom?!

I waved goodbye, then hovered outside. I asked a server what was on the menu and she mentioned turkey and roast beef. I requested pasta for Max, since he can't chew that stuff. The principal walked by. "Don't worry, it's a buffet, there's pasta there!" she said. "He'll be fine."

The night ended at 10:30, which is late for Max; he usually crashes around 8. I got there at 10:15 and the principal and assistant principal were sitting outside the room.

"He had the best time!" she told me. I walked in and found Max rocking out on the dance floor, a yellow lei around his neck. He didn't want to leave.

And that was prom, a night filled with friends and fun. It was Max's idea of a great time. And really, that was all that mattered.


Friday, June 1, 2018

The Disability Blogger Weekend Link-up: your posts with the mosts


What to do if you're new here

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: Working moms of children with disabilities and guilt: group therapy

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.



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