Thursday, May 31, 2018

Adaptive clothes for people with disabilities get sexy


Adaptive clothes can be every bit as haute and hot as styles you'd find on designer runways, as the third annual Design for Disability fashion show recently proved. Held by the Cerebral Palsy Foundation (CPF) in New York City, the event showcased innovations in fit, closures and form. The designers: students from the Fashion Institute of Technology (F.I.T.), Pratt Institute and Parsons The New School for Design, who got feedback from CPF and mentorship from Anna Sui. 

The fashions were as functional as they were cool. "It literally put me in the women's shoes to be designing and making this clothing that would be more accommodating but still beautiful,"says Maria Terracina of Pratt, who created the above super-chic jumpsuit. It's modeled by Xian Horn, a woman with cerebral palsy who's a teacher, speaker, beauty advocate and blogger.

"Made out of the Liberty of London fabric, the jumpsuit takes away excess fabric so seated body types don’t struggle with the extra fabric in the back," explains Maria. "It has various options for closures, and a ribbon pull for easier access for people who are unable to grasp the small zipper. The magnets at the bottom and the two-way zip are in place to accommodate anyone with prosthetic legs or leg braces."

Here's a look at some of the other styles that debuted at the show:

Model: Jessy Yates, an actor and performance artist with cerebral palsy
Designer: Richard Jimenez, a junior at F.I.T.
Spandex pants allow for ease of movement around the knee area when shifting from a standing to seated position; pockets over the hip line make for comfy storage of—and easy access to—phones and keys. "It's tough to admit, but it's often hard for people to see past disability," says Jessy. "There are so many misconceptions and misperceptions. What better way to change this than by creating fashion that helps us to see it all differently?"

Model: Jaleesa Graham, a model and actress who's part of Theatre Breaking Through Barriers
Designer: Fisayo Quadri, a junior at Pratt Institute
These high-waisted pants have a wrap-around flap across the top to do up pants with ease.

Model: Peter Torjic, a dancer with CP 
Designer: Daniel Lee, a junior at Parsons
This reversible jacket, with a paisley pattern on one side and denim on the other, buttons up in the front over the waist area—so it avoids bunching up or getting caught in the wheels.

Model: AA Brenner, a playwright, dramaturg and Native New Yorker.
Designer: Kevin Kim, a junior at F.I.T.
A jacket with stretch panels inserted across the shoulders for greater flexibility.  

Wednesday, May 30, 2018

Working moms of children with disability and guilt: group therapy

"I am a mom of a young child with cerebral palsy, and a teacher, " a reader writes. "I love working, and am passionate about my job, although it sometimes has me overwhelmed to the point where I feel like I'm not a good mother or wife. A job opportunity has come up that would require longer hours—I'd be at work from 8 to 5, year round. I'm concerned about my kid being at daycare for most of the day and coming home exhausted. I haven't even taken the job, and already I'm feeling guilty. How do moms of children with disabilities who work full-time deal with the guilt?"

I have been a working mom for as long as I've had kids—that's 15 years now, making me a bona fide pro. While I've had flashes of guilt, especially when I've missed school events because of work or mini milestones, the fact is that we are a two-income family by necessity. My salary helps cover therapies for Max, not to mention, the mortgage payment, keeping our family fed and clothed and All of The Stuff.

When Max was little, work was my therapy. I had a whole lot of anxiety about his development and his future, and my job gave me balance and perspective—which made me a calmer mom. At work, I I still think it does that. Like the reader above, I enjoy my work (I'm a magazine editor). Although I am supporting my family, it's also something that I do for me.

Having a dependable, warm and caring sitter has helped me avoid guilt trips, because I trust that my kids are well cared for. Ours used to sit through therapy sessions with Max. We had notebooks in which the therapists would explain what they'd worked on with Max, and let me and Dave know how to help and enable him. I didn't guilt myself up about not being there for the therapies. I just did the best I could when I was around Max, and took satisfaction in that.

So, that's what's helped with deflecting working mom guilt. As for exhaustion, well, that's just part of the mom gig, whether you work outside of your home or not. Years ago, I left a job that involved late hours, and have been fortunate enough to find a better work-life balance. I try my best to get chores done during the weekday (I've been known to toss in a load of laundry at 10:00 p.m.), so weekends can be mostly fun.

What's been your experience with working mom guilt? What's helped keep it under control?

Tuesday, May 29, 2018

Guess who marched in our town's parade

I called our local fire station last week and left a message for the chief; Max was hopeful about riding in a fire truck in the town's Memorial Day parade. I didn't hear back, so we stopped by the station early yesterday morning.

I'd told Max I wasn't sure it would happen, but I knew that he thought it would. Flexibility is not one of Max's strengths; when he gets something in his head, he assumes things will go the way he imagined them to. Max even put on his firefighter hat. He stopped wearing it all the time a while ago, and now reserves it for special occasions.

The guys at the station greeted Max by name, and one of them grabbed the chief. "No, sorry, we can't do it because of liability issues," he explained. If the department got a call while the truck was in the parade, it would have to book out of there. Max couldn't be onboard (although it is his ultimate fantasy to zoom to a fire).

"Awwww...." said Max, who got the gist that the answer was "Sorry, bud." I asked if they would honk at him as we watched the parade, and they said yes. These guys are the best; for his twelfth birthday, they gave him a ride in his favorite fire truck to his birthday party. I still watch the video from time to time—Max was so ecstatic.

Not this time. He trudged out of the station, bummed. We grabbed some bagels, then parked at the start of the parade, where the fire trucks were getting ready to roll. Max dashed over and waved hello. Then he spotted our high school's marching band, and got it into his head that he was going to help hold the banner.

"No, Max, you can't do that," I said, as he grasped the banner and the two high schoolers holding the ends of the pole looked on, perplexed.

Max was on the verge of losing it when Dave yanked him away. And then, we spotted the Elks Club crew. Our local lodge is quite amazing. Every year, they sponsor youth with disabilities for a summer camp program, and Max has been a lucky beneficiary for several years now. They also host a great holiday party, and generally know how to have a good time. I spotted my friend Annemarie, a member, and mentioned that Max wanted to march in the parade. And just like that, he was in. When it was the Elks' turn to go, he grabbed hold of the banner.

The two guys holding the banner on either end had a lot of patience, because Max was pulling back on the pole, for support. But on they marched. Max was so excited. Ben was on Dave's shoulders, also quite pleased.

Max walked the entire route, which was about a half mile or so. He kept turning around when the fire trucks honked their horns. At the end, when the trucks pulled up after us, Max dashed over and informed the guys that one of the trucks had a new horn. It turned out the entire truck was new. Max pointed out that the siren was in a different place and that there was a new decal, impressing everyone with his observation of detail.

I was seriously impressed with how the morning had gone. There was huge progress from last year's Memorial Day, when Max lost it at a parade. As we left, Max asked, "Next year?" And then, later in the day, he told me again that he wanted to be in the parade. And he said that he didn't want to ride the fire truck—he wanted to walk.

Friday, May 25, 2018

The Disability Weekend Link-up: Memorial Day 2018 edition

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 two things I think with every advance for people with disabilities

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, May 24, 2018

When "He's got a great personality" isn't code for anything

Growing up, saying that someone had a great personality was sometimes code for "She's not so attractive/slim." Then I had Max, and when I heard "He's got a great personality" I took it the wrong way.

As the parent of a child with disabilities, you can get a wee bit protective/defensive/utterly and completely neurotic about how others view them. That partly comes from experience—there are people who fail to see all of Max, including his abilities, and I so want them to. Max's cerebral palsy is just one part of who he is.

For many years, I had a bad stereotype stuck in my head. When Max was a few years old, someone in my family noted that he smiled a lot because he was "simple-minded," a comment that really pained me.

And so, when I'd get those "He's got such a great smile!" comments, I'd feel as if that was the only positive thing people could think to say about him (well, besides how cute he was).

You can never erase experiences or awful things people say, but you can mature as a parent and develop a thicker skin. Max does have a sunny personality and a smile that lights up a room; they're one of the most apparent things about him. Over time, I got past my sensitivity about how people perceived him and learned to take those compliments for what they were: compliments. I also realized that Max's good cheer could encourage people to get better know him. I didn't have to always pave the way for him to connect with people; he had the charm to do it himself. We all have our strengths and weaknesses, and one of Max's is his personality.

I was reminded of this recently, during Max's IEP.

"He's always got a smile on his face!" one of his therapists noted, before he walked in.

"Every class needs a Max!" announced a teacher.

And I beamed.

Wednesday, May 23, 2018

Max doesn't need the help, thankyouverymuch

These are two of my favorite videos of Max and Ben.

Ben thought that Max needed help with his homework; Ben is on a campaign to be the boss of us all. So he started to weigh in, and drew Max's finger to the iPad so Max could type the answer. (He uses the SnapType app, which enables users to upload a workpage then type or draw on it.) But then, Max had his say.

I can see Ben starting to figure out that Max can use a little extra help here and there. And I can see Max making it clear that he knows what's up, he's got skills and he's the boss man.

Tuesday, May 22, 2018

The two things I think with every advance for people with disabilities

The news came out last week that Xbox will debut a controller for gamers with disabilities. As is always the case when there's a new product or service out for people with disabilities, I thought: YEAH! Awesome! As is also typical, my next thought was not as happy.

Microsoft's Xbox Adaptive Controller, which will be released later this year at a price of $99.99, allows users to play in a way that works best for them. It can be mounted onto wheelchairs or tables, it can be played with one hand, or set on the floor so that gamers can use the two large black buttons with their feet. It will be compatible with external joysticks, pedals, switches and buttons. Basically, it does everything a standard controller can do. 

The company consulted with gamers with disabilities during the development process, along with nonprofits including the Cerebral Palsy Foundation, AbleGamers and SpecialEffect. The company built an Inlusive Tech Lab at its Redmond, Washington Lab for testing, according an article in Eurogamer.

Super, of course. But: What took them so long? The Xbox came out in November 2001—that's 16 years ago. Max has been able play games that involve waving his hands, like bowling and tennis. But he can't play any that involve manipulating a controller because it is beyond his capabilities. I'm not saying that years of lost opps for playing video games is a tragedy. As if! This boy does not need any more screen time in his life. But why shouldn't the Xbox be fully accessible to him, same as any teen?

It's been my observation, over the years, that disability innovation at companies happens only if a person at a company is disabled or knows someone with disabilities, or a person with disabilities or a family member takes the initiative. I'm thinking of Tommy Hilfiger's line of adaptive clothing, designed by the awesome Mindy Scheier of Runway of Dreams; the mom of a child with muscular dystrophy, she collaborated with Tommy Hilfiger for his adaptive line. I'm also thinking of David Niemeijer, who created the first speech app Max ever used, the Proloquo2Go, for a friend who was paralyzed from the neck down in a car accident.

And do you remember the story of the teen with cerebral palsy who wrote Nike, in 2012, asking for an sneaker with an adaptive closure because he had trouble tying his? Nike had had already been working on a model with a Velcro closure after their very first employee had experienced a stroke. The FlyEase came out in 2015; Max has a pair. While he can't yet put them on himself, the fact that they unzip in the heel makes it easy to slide his feet right in. Also: They look really cool.

The inspiration for Microsoft's Adaptive Controller, according to DiverseAbility Magazine, came during the company's 2015 One-Week Hackathon for employees. I wonder where that person got the idea from. I don't think this sort of thing should be occur by happenstance; more companies should regularly be encouraging their development staff to think about creating for people with disabilities. They should have entire hackathons devoted to disability, not to mention, dedicated teams.

Don't get me wrong, I am hardly ungrateful for advances that enable people with disabilities to enjoy all that life has to offer. It's just that as the mom of a teen with disabilities, it is frustrating to continuously face a lack of access, the kind not required by law. I mean, come on, Coke and Pepsi: how about a beverage bottle top that a person with fine-motor challenges could open and a bottle that's more grasp-able, too? Or a chocolate bar wrapper that opens super-easily for someone with stiff fingers, Nestlé? Or toys with bigger, easier-to-push buttons and dolls that are easier to dress for kids with disabilities, Mattel? Or adaptive pens, Bic? Or adaptive blazers, H&M? Or a tube of toothpaste my son could open and squeeze, Tom's? I could go on and on.

To be sure, often there are ways to adjust a product so it works for a person with disabilities, as Max's therapists have shown me over the years—a ring pull put on his jacket zipper so he can yank it, putty or rubber tubing placed around a pencil so he can grasp it. Cottage industries have sprung up around enabling devices and gadgets. But how amazing would it be if more products were inclusive to start with so that Max and others like him would feel more part of this world instead of always having to fix—and fight for—things. Yes, adaptations cost money. Yes, people with disabilities deserve them.

There are an estimated 40 million Americans with disabilities, or close to 13 percent of the population. It's been said that people with disabilities are America's largest minority, but the one who get the least amount of attention, consideration and protections. As the parent of a child with disabilities, I am hyper-aware of that. And this is why, each time an advance comes along for people with disabilities, I rejoice even as I feel bummed about how long it took to arrive, and how far we still have to go.

Image: Microsoft

Monday, May 21, 2018

Butterfly therapy

Last week, I had a rare dinner out with friends. The conversation turned gloomy; it had been an awful news week. Another school shooting, with ten dead. A school bus crash in which a student and teacher had died. A plane crash in Cuba, with 100 dead. A mother had jumped off a rooftop in Manhattan, her seven-year-old son in her arms.

Thankfully, there was butterfly therapy at home; we'd gotten an Insect Lore Butterfly Garden. We mailed in the voucher for a cup of caterpillars, watched them grow big and fat off the food in the cup and turn into chrysalises; watched those for a week and a half and wondered if we'd somehow killed them all. And then all last week, we'd wake up to find yet another Painted Lady had emerged. There were four.

All of us were fascinated by the display of nature right there on our kitchen counter. Max named one butterfly Ben, although we we couldn't be sure which one. Ben named one Ben, although we couldn't be sure which one. We watched them flit around the netted habit and drink sugar water out of the feeder. We laughed when a babysitter told us she'd heard a noise in the kitchen and thought someone was in the house; it was the butterflies, fluttering.

And then, it was time to let them go. After Sabrina unzipped the top, just one flew out. I think we were all kind of hoping the others would stick around but of course, soon, they went too. We watched, happily, and life felt a little lighter.

Friday, May 18, 2018

The Disability Blogger Weekend Link-up: see it, click it, love it

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: When is it OK to leave your child with disabilities home alone?

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, May 17, 2018

Ben speaks Max

"How are people going to understand you if you don't use your iPad?" I asked Max last night.

"I can talk!" Max said, as he always does.

We were driving home from a school event where he got to paint pottery. He'd chosen a gumball machine, a teacher told me. Except when Max mentioned that in the car, "gumball" was impossible to understand. I told him that I knew what he'd said only because I'd been told.

"Max, you can definitely talk but sometimes the words are not easy for people to understand," I said.

"I hate the iPad!" he responded.

For a while now, Max has been resistant to using his speech app to communicate when he's around us. Max doesn't just want us to understand him, he expects it. And that's a problem, because often his speech isn't that easy to understand. He does vowels pretty well but consonants other than "m," not so much. At times, he gets frustrated with us. At times, I get frustrated with him for refusing to use his speech app, and frustrated with myself for not understanding him. When we reach an impasse, I'll either ask him to verbally spell out the word he's saying or to type it on my phone.

Max has a tendency to repeat things, which comes in handy as once I know how he articulates a word, I know it for good. "I'm moving to Orlando!" is one of his favorite phrases these days. (For the record, he's only moving in his dreams.) And of course, when he declares "I hate you!" to me to be annoying, it's pretty clear.

There is one person in our household who regularly gets what Max is saying. That would be Ben. Dave and I joke that Ben speaks Max. I guess it's like growing up with a second language in your house—it's the most natural thing in the world.

Wednesday, May 16, 2018

Hot-car deaths: 8 ways to keep your child safe

When Max was a tot, I never heard a peep from the back seat when we were driving. I'd despair about his lack of babbling, as I knew speech was going to be a challenge for him. I never imagined that the silence could endanger his life. Children who are nonverbal or who have intellectual disability are at risk of being forgotten in cars, as babies and sleeping children are—and could die from heatstroke. This is on my mind because of a new awareness initiative from The Weather Channel to prevent hot-car deaths.

Children with disabilities may also have issues with body temperature control, exacerbating the hazards of a burning-hot car. Still, every child who ends up in this situation faces a risk of death. If the temperature outside is 84 degrees, after 10 minutes an interior car temperature can rise to 103 degrees, The Weather Channel estimates; after 30 minutes, it hits 118 degrees (its Scorching Car Scale airs during summer mornings).

Last year, 43 children in this country die from overheating in a vehicle, according to the nonprofit You may wonder how this could happen if a parent is a responsible one. It often occurs when parents bypass their usual routine—say, they don't drop a child off at daycare and drive directly to their office, leaving their little one in the backseat. One of the most insightful and heartbreaking pieces I've read on the topic ran in Parents: You'd Never Forget Your Child in the Car, Right? 

The weather may still be relatively mild in most parts of the country, but it's never too early to be thinking about this. The more safety habits parents get into year-round, the safer children will be. The Weather Channel offers these protection tips:

1. Be extra alert when your routine changes.
2. Leave a toy on the front seat that you'll notice as you park.
3. Place something you'll need in the back seat. Karen Osorio-Martinez—a scientist whose one-year-old, Sofia, died last August in the car Karen had driven to work—just launched a nonprofit to encourage safe habits that can save baby's lives. One of them is "Bag in the Back"—getting in the habit of always putting an essential item like a purse, briefcase, phone, computer or backpack in the back seat, so you'll remember to take your child out.
4. Position a child's car seat in the middle of the back seat so it's easier to see the kid. (I Googled this and surprisingly, the middle of the back seat is consider safer than behind the front seats).
5. Set up a system with your child care provider to confirm if a child was or wasn't dropped off.
6. Check the back seat every time you get out of your car—aka "Look before you lock."
7. Discuss hot car deaths with every person who drives your child.

Another safety measure you can take: Waze has a "child reminder" option you can turn on in "Advanced settings" (under "General") and add a personal message. Each time you arrive at a destination you've entered into the app, the message crops up. My reminder looks like this:

And of course: If you see a child alone in a car, do not hesitate to call 911. 

Tuesday, May 15, 2018

When is it OK to leave your child with disabilities home alone?

The answer to "When is it OK to leave your child with disabilities home alone?" is, in my heart, "Never ever ever ever." I've worried about Max falling, having a seizure or the house catching fire, among other gloomy scenarios.

But the reality is that Max is getting older and more independent, and he needs to gain confidence about taking care of himself. The other reality is my life as a mom and juggling various responsibilities for each of the kids. Last week, I had an important meeting to attend at Sabrina's school, and Dave was away on business. I've left Sabrina with Ben after he's asleep on occasion. Max has never been at home without me, Dave or a sitter. But there was no sitter to be had. And so, the three of them it was, with Ben asleep, and the house alarm on. I was about fifteen minutes away. In hindsight, I could have consulted with one of Max's doctors—I likely would have felt more reassured.

Sabrina knows to call 911 if Max ever has a seizure or accident. Max himself knows to call 911 in case of emergency. There are neighbors I can text to swing by. Still, my mind was at home during that meeting. Max, already in his pj's, was supposed to head upstairs and get in bed at 8:30 (something else he'd never done on his own). Would he be OK? What would happen if Max and Sabrina started fighting? What if....?

"We're fine!" Sabrina texted. 

I texted back at 8:40: Was Max asleep?



I couldn't get home faster enough to find out the details. But there was nothing to report. Max and Sabrina didn't fight, not even a bit; he watched YouTube videos of fire trucks (his brain-numbing media of choice), she did homework. At exactly 8:30 p.m., Max turned off the TV, walked upstairs, closed the door to his room and went to sleep, like a boss. 

And that was that.

The next morning, I gave Max props.

"You're big now, and you can stay at home with Sabrina, without me—that's great!" I said.

"Next week?" he asked, hopefully—because like any teen, he'd like for his mom to leave him alone. 

It wasn't exactly leaving him home alone, but it was a major baby step. Correction: teen step. It's all step by step. 

One more milestone, aced, for Max and me. 

Image: Hughes Entertainment

Monday, May 14, 2018

Mother's Day, from the mom's point of view

I can't believe I got to sleep in and I woke up at 7:55 a.m. I am just going to lie here and pretend to be asleep so nobody bothers....

HELLO FAMILY! Thank you for the breakfast in bed.

Twenty minutes later: OMG, why does it look like a tornado hit the kitchen when all they did was slice some bagels and smear on cream cheese?! I am so not cleaning up.

"Hey, guys, if you leave dirty dishes in the sink they are not officially cleaned!"

You know, "Percentage-wise the kitchen is much better than it used to look!" does not absolve anyone of the fact that it still looks like a disaster. I am pretty sure that statement would not stand up in court if messy kitchens were, in fact, punishable by law. If only.

Sit at kitchen table as two children draw a card. As in, for me.

Ten minutes later, head back upstairs with plans to take a shower that lasts longer than three minutes. Exciting!



"Hi! Yes, you go pee pee in the potty! Nice job!"

Is it so wrong to wish your family would go away for Mother's Day?

Five whole minutes of solitude to slather on body lotion, moisturize my face and pluck my brows. Squee!

"Can someone get the boys dressed who isn't me? I put out nice clothes for them, I'd like to take pictures on the front stoop."

"Fine, he can wear his Mickey Mouse shirt."

Maybe one of these years I'll take a photo when my hair isn't wet. How is it possible another year has passed since last Mother's Day? The baby looks like a big boy now. Crazy.

Brunch at a nice restaurant. One child refuses to eat, one child eats most of my meal, one child throws most of his food on the floor. Relaxation central!

Return home to find that a butterfly has emerged from one of the cocoons we've kept in a netted habitat for the last week. One child attempts to pass it off as my gift. Nice try.

Play a game, do homework, watch some TV, Dustbust crumbs around entire first floor due to child's love of graham crackers. Child announces she needs a "trifold presentation board" for school project, which is way better than announcing it at 9:20 p.m. once stores have closed, as typically happens. Make joy trip to Staples.

Take kids to local pizza joint for dinner. Spend a disproportionate part of the rest of the evening watching YouTube videos of parents who have surprised their children with trips to Disney World, thanks to one child's obsession/wishful thinking.

Bath time! PJ's! Snack! Different day, same routine.

"I love you!"

"I love you, Mommy!"

"Love you!"

The. Best.

Friday, May 11, 2018

The Disability Blogger Weekend Link-up is ready to go

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: To the moms of children with disabilities who push past every no

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, May 10, 2018

To the moms of children with disabilities who push past every no

To the moms who have heard doctors say the worst about their children—they may not do this, they may not do that or that or that or that—and who repressed those "nots" in their heads and found hopes in their heart.

To the moms who have been told the insurance wouldn't cover the therapy, the device, the piece of equipment—and who made call after call and sent letter after letter and who got the therapy or device or equipment covered.

To the moms who put away the grim medical records and the scary MRI scans and the dismal school reports and who focus on the child in front of their eyes, progressing at their own pace and being their own lovable selves.

To the moms who have been told the doctor/specialist/therapist had no room in their schedule for their child—and who tried, tried, tried again and got their child in.

To the moms who were told their child wasn't ready for the communication device or the speech app and who, determined to enable their child, found ways to get the communication device or speech app to be accessible to their child.

To the moms who were told their children with disabilities couldn't participate in a sports event, a dance class, a camp program—and who figured out a way to make it happen.

To the moms who, when people stare at their children sadly, say, "This is _____, would you like to say hello?" and try to get people to see the abilities.

To the moms who, despite the naysayers, have done the alterna-therapy. Because if it couldn't hurt and it might help, it's worth it.

To the moms who have been told at the IEP that the school couldn't do this and couldn't try that—and who, wait for it, made them happen.

To the moms who have been told their child likely wouldn't make more progress in speech, walking, eating, whatever—and who said "That is N-O-T true" and who found a different doctor, specialist or therapist who could see their child's potential...and whose child kept right on making progress.

Of course, every parent has to be an advocate for their child. But as the moms of children with disabilities, we have extra obstacles to overcome, extra tall buildings to leap over, extra mountains to climb. And while we don't succeed every single time, we never stop trying every single day.

So to the moms who push for, advocate for, argue for, plead for, do everything for their children with disabilities:

Happy Supermoms Day to you.

Wednesday, May 9, 2018

Introducing the next Annie: that would be Max

Max is obsessed with Annie—the movie, the show, whatever he can watch on YouTube. That's his current early morning activity (he wakes up around 5:30 a.m., with Ben), before it's time to get ready for school. He saw Annie performed at a local theater a couple of years ago, but for some reason he's now really into it.

Max has been telling me he'd like to be in the show. Yesterday, during music therapy, he and his awesome therapist, Amanda, decided that Max would perform a song from Annie during the recital in June. Max was leaning toward It's A Hard Knock Life, but then settled on Maybe. He gave it a try:

As they practiced, Max's enunciation got a little clearer (and Sabrina performed the role of Obnoxious Sister to perfection). That's one of the amazing powers of music therapy: Max is sometimes able to sing words he can't totally speak.

Afterward, I had to drive him to an evening school program and we sang Maybe in the car the whole way there. I know the words, since I used to sing the Annie soundtrack on bus rides home from school, because I was crazy that way.

This morning, as we practiced again, I called him MaxAnnie and he giggled. This is eminently better than those times when he tells me "You're not funny!" He is so excited to sing it at the recital. I predict he's going to bring the house down.

Tuesday, May 8, 2018

Relaxation lessons from toddlers: Take time to stop and watch the bath water drain

I seem to be stuck on one internal setting, and it is "fast forward." When I am not attempting to GSD, I am thinking about how I can get stuff done.

I've always been proactive, but since having Ben and needing to juggle more, I'm in overdrive. This works well to ensure that our family can function. This does not bode so well for chilling. It's a recurring theme in my life; I've written entire articles on it. I do fine if if I'm sitting in a good movie or show, but at home, it's hard for me to take mental breaks from that endless to-do-list in my head. Lately, though, Ben's been helping out with my zen.

This is somewhat ironic, given that he is one of the main reasons I can't sit down much. He has places to go and things to ruin, and he runs—not walks—anywhere. One of his favorite games involves jumping off the living room ottoman onto the sofa; whether the ottoman is actually close to the sofa does not seem to matter. He also enjoys tossing whatever he can get his hands on off the front porch or back deck. Granted, this is better than his toss-everything-in-the-toilet phase, although I found my blush brush lying in the bushes the other day.

But then, Ben brings my mind into focus. He's in a "why?" phase—he wants to know: Why are there bees in the bushes? Why do Sabrina and Max go to school? Why do I go to work? Why do socks exist? Why does he need to eat dinner? Why is it getting dark? Why do cows moo? Having these chats with him yanks my brain back to the present, so I can't be preoccupied with all the things I need to get done.

And then, bath time. He loves it so much that lately, he refuses to leave the bathroom until the last bit of water has drained. At first I was all, "Ben, time to put on pajamas!" But now I take the extra couple of minutes to perch and watch the water trickle out of the tub.

"All gone!" he announces when the last glurg is heard. And for those precious minutes, that drive to do, do, do is all gone, too.

Monday, May 7, 2018

He is the boy I once worried he'd never be

I took Max and Ben out to dinner the other night. Max got baked ziti, his current favorite pasta fix. (He's over both spaghetti and stuffed shells.) I tucked some napkins into his shirt collar before he ate.

He downed the entire bowlful while I was busy trying to get Ben to eat, asking for help only with spearing the last bits. He barely got any on the napkins.

As I helped him clean up, my mind flashed back to a Vermont restaurant we'd eaten in during a trip when Max was five or six. Dave had been spoon-feeding him. I glanced over to a nearby table, where a large extended family was eating, and noticed a teen with disabilities. He was eating his meal contentedly, and I remember wondering whether someday, Max would also be able to eat independently. It was hard to imagine.

I kept sneaking glances at that boy throughout our dinner, as if he could help me see Max's future.

These days, I do the same when I notice adults with intellectual disability on a job. Could that be Max handing out mail? Could that be Max greeting people at a store? Could that be Max helping to prepare food? Could he could he could he?

I wonder. I worry. Only now, I also have the wisdom to know that somehow things will work out, same as they always have. Even as the anxiety swirls around my head, my heart says, "He will be OK." Max is the boy I once worried he'd never be—a boy who can walk, talk, ride a bike, run, play softball, communicate, read, write and who keeps right on learning. He is full of abilities. Years ago, we couldn't take him to new places because he'd have sensory meltdowns. Now, we can't keep up with his demands to visit new places. He is the boy sitting in the restaurant  happily eating on his own.

One day, I hope to be right here sharing about Max's great new job...and thinking back to the time when I used to wonder.

Friday, May 4, 2018

The Disability Blogger Weekend Link-up: your post BFF

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: Love That Max: The other boy practicing mailing a letter.

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, May 2, 2018

I can't take him anywhere: the perils of the teen backseat driver

Max has a new favorite sport, and it is called "backseat driving."

"No, no, no!" he says when Waze directs me to a less traffic-y route when I'm driving him to school for a program.

"Wrong way!" he inevitably announces when we are driving somewhere new—as in, a place he has never been to before. 

"SLOW. DOWN!" he admonishes me, as I back out of the driveway.

This is all seriously annoying.

"MAX! You are stressing me out and I need to focus on driving!" I said to him, agitatedly, this weekend as we took Sabrina to an event and he kept telling me I was not going the right way. Sabrina rarely takes her eyes off her phone when we're in the car, so this isn't an issue with her. I could likely make it from New York to Florida before she'd look up from Insta and ask where we were.

I turned my phone in its holder so Max could see I was following the path Waze had laid out for me.

"Wrong way!" he said, and when I glared at him he said—and I quote—"Ha ha ha."

Max actually does have a pretty phenomenal sense of direction. No matter what, though, he thinks he knows better than the navigation apps.

Sometimes, as I'm getting worked up, I catch myself and think about how incredible it is that Max is annoying me. Incredible because there were times when he was little I wasn't sure how he would be able to communicate. And boy, is he communicating.

Max is being a know-it-all teen. And I am relishing how typical this is...even as he bugs the heck out of me.

Tuesday, May 1, 2018

Breaking: Someone else in our house noticed crumbs

Last week, I noticed a circle of black stuff on the kitchen floor. Then I realized it was moving. Upon closer inspection, it turned out to be a cluster of baby ants gathered around cookie crumbs. I decided to just leave them be for a couple of hours, as a little experiment, to see if anyone else noticed. Dave, Sabrina, Max: They all passed through the kitchen. Not a word. Ben was too busy doing laps to spot them (he runs, not walks, everywhere).

I wasn't surprised. My children have chores but typically, nobody in my house ever picks up anything off the floor—crumbs, socks, books, magazines, toys, empty cups, bugs dead or alive—but me. (Although there was that one time when Dave spotted baby ants on our kitchen table and emailed me about it on a Saturday night while I was out at a party.) (And yes, we get ants once warmer weather hits, got any ideas?)

You can usually find me puttering around at about 10:30 p.m. on any given evening, cleaning up after everyone and particularly after people named "Ben," who has a thing for crackers and also a thing for gleefully grinding them into the floor/the couch/wherever. At two years old, Ben is a whirling dervish of destruction.

Me, I need neatness (or some semblance of it) for peace of mind. It's a lonely struggle, this clutter-busting. But I may have found a kindred spirit.

Yesterday, I gave Ben a yogurt with a peanut butter topping as an afternoon snack. This typically means yogurt smeared over the table and his hair and peanut butter topping everywhere. Once, I found a peanut butter chip in my bra.

As I was about to grab the Dustbuster, Max said, "I'll do it."

I wasn't sure I'd heard him right. Did I mention that nobody picks up around here?

"What?!" I asked.

"I'll do it!" Yes, he was definitely saying that. Before, he'd noticed me yawning (Ben had been up part of the night before with a virus) and asked if I was tired. Maybe he was taking pity on me? What suddenly compelled him to clean up crumbs?

Whatever! I handed him the Dustbuster and let him have at the peanut butter topping. He determinedly sucked up every last bit, including the stuff on the table, as Ben looked on all innocently.

Who knows, Max could become the designated Dustbuster of our home. He seemed pretty happy doing the task although granted, sucking up crumbs with a little machine does lose its charms pretty quickly.

Of course, I was thinking it was a good dose of occupational therapy. But mostly I was thinking: WOW WOW WOW, SOMEONE ELSE NOTICED CRUMBS.

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