Friday, August 23, 2019

The Disability Blogger Weekend Link-Up: Catch up on your reading!

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: A girl in a wheelchair spots a model in a wheelchair—the story behind the viral 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. Thanks for stopping by!

Thursday, August 22, 2019

The masks special needs parents wear—sound familiar?

I just finished a powerful new book, The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver by Donna Thomson and Zachary White. I've followed Donna for years; she has an adult son with cerebral palsy, Nicholas, and I've found her writing inspirational, helpful and very relatable. The book is the same; it's a hyper-honest look at what it's like to be a caregiver, whether for a child, a spouse or a family member, with invaluable reassurances and resources. Donna gave me permission to share the following portions from Chapter 4, which particularly resonated with me. 

The people around us have expectations of us just as we have expectations of them. We are aware of other people's expectations most intensely when we perceive a disconnect between how we feel and what we believe others need from us. In the midst of struggle, we all wear a variety of masks that present the parts of ourselves we believe others want to see and hear.

The "Saint" Mask

Saints seemingly embrace struggle with such elegance that their compassion and endurance are proof that they are otherworldly when coping with suffering. This mask is so admired because it is greeted with awe. Saints are revered but reverence doesn't necessary equal understanding.

Appreciation happens from afar, but it doesn't require others to step toward caregivers. Instead, others are encouraged to remain comfortably distant, placing those wearing the saint mask on a pedestal, rationalizing their distance with an awareness that caregivers are so different because of their unyielding willingness and compassion: "I can't believe you are doing so much." "I couldn't endure what you experience every day." "I don't know how you do it. I'm too emotional." This praise, though appreciated, also situates caregivers as different, distinct, and even aberrant because they're engaged in something that is believed to be extraordinary. The mask traps its wearers into adhering to what others want to believe about them, implying that saints don't need to be listened to or learned about because, after all, they're saints—not people.

The "Everything is OK" Mask

This mask allows others to feel comfortable knowing that life, however challenging, is still within control. Despite what is happening, everything is presented as okay so that people around you will not have to contemplate what might happen if life doesn't return to normal or if parts of life don't always fit within the category of "okayness."

This mask can feel uncomfortable, and even smothering at times, because authenticity is sacrificed at the expense of others' needs. Since the wearers of this mask devote unending attention and effort to maintaining the appearance of normality, other people are not invited to appreciate how a caregiver can be positive and still devastated, coping and still overwhelmed, a totally different person and still the same person.

The "Fighter" Mask

The fighter mask conforms to the belief that all challenges can be overcome if the wearer has an absolute and unwavering desire to fight at all costs. When every conversation is about a cure, or a possible cure, this mask denies wearers the possibility of exploring life between "battles"—if only for a moment—because there is always something that needs to be done and some war that needs to be initiated.

Since other people demand hope at all times, the fighter mask excludes possibilities for sharing about nonfighting care experiences like intimacy, fragility and moments of peace. Deviations are often greeted with bewilderment and disbelief: "There's got to be something you can do, right?"   

All of these masks highlight that caregivers aren't simply shaped by their care experiences. Rather, the people around them—family, friends and colleagues—also determine what is (in)appropriate to think, perform, and share about their care experience. In the process of interacting with others, caregivers, like other stigmatized identities, may feel compelled to perform, act, and respond in ways that interrupt possibilities for authentic and satisfying social support.

Donna is also the author of the parenting memoir The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. Her coauthor, Zachary White, blogs at The Unprepared CaregiverAlso check out Donna's guest post: 5 secrets of special needs parent happiness. 

Wednesday, August 21, 2019

When your child with disabilities regresses

Educators talk about the summer slide—a decline in reading and other academic skills that can happen when kids aren't in school over the summer. Max has never had learning setbacks as a result of going to camp for the better part of the summer. This year, though, his ability to navigate stairs seems to have suffered.

At school, Max walks up stairs upright but at home he scampers to our second floor on his hands and knees, which is how he feels most stable. Since coming home from camp he's been getting stuck a lot; he'll get halfway up, then just not able to move forward. This started happening a few months ago, and I figured it might have something to do with getting taller—using his hands and knees is now more awkward.

But the other night, Max stood at the top of the stairs after his shower. And he stood there. And stood there. I could see him trying to move one foot down, but he was hesitant to take that first step. I was shocked. The boy who typically traipses downstairs to the living room when he's up in the morning before us all suddenly couldn't go downstairs on his own. I gave him a hand, and wondered if some of this may have to do with his muscles getting tighter. Max has four-quad spastic cerebral palsy, and as he grows his tendons are at risk of getting tighter. I also wondered if perhaps his muscle memory had regressed and he needed to relearn how to navigate stairs down and up, and get his confidence back.

Maybe it's all of those. I booked an appointment with the orthopedist for two weeks, until which time I will flex my worrywart muscles. I'll also be reaching out to his school physical therapist as soon as school starts, and maybe consider adding physical therapy back into his mix of home therapies.

Max's physical progress has been hard won. Nothing, and I mean that literally, has come easily to him, from the time when he was a tot and the Early Intervention physical therapist spent months showing him how to crawl so he could build up arm and leg strength. I can still vividly recall the glee I felt as I watched him walk up stairs for the first time when we were on vacation in Vermont. I've never taken Max's ability to move around for granted—just a few months ago, when I first noticed him get stuck on the stairs, I felt a flash of gratitude that he was able to do it all. And now, I feel pained that he can no longer handle stairs, and terrified that he will fall.

Max seems unperturbed about the stairs situation. This morning, I heard him wake up. He walked into my room. "Do you need some help going down the stairs?" I asked. "No, I'm OK," he said and left. And then, he came back. "I'll walk you down," I told him, and I did. As scared as I am, I felt major relief that he knew to ask for help. 

Tuesday, August 20, 2019

What's happening out there: news to know, stuff to make you smile

A not-too-random roundup of news that'll help you or your child, make you think or just make you smile.

The above Minneola, Florida moms celebrated back to school. "Some of you are sad," Shawna Genua posted on Facebook. "We will be juuuuuuust fine." Can you relate? Yep. #ByeFelicia (Photo from Shawna Genua.)

The U.S. Labor Department has issued an opinion letter stating that parents and guardians can take family/medical leave intermittently to attend IEP meetings. In other IEP news, this Oklahoma mom—who struggled to get her high-school son an updated IEP—resorted to a little-known federal law and filed a complaint directly to the state, skipping mediation and the whole due-process thing.

Some so-called people have been peddling a product known as Miracle or Master Mineral Solution, among other names, as a treatment for autism, reports Disability Scoop—but when combined with citric acid, as recommended, it becomes dangerous.

Check out this great piece by Greta Harrison on why teachers need to become advocates for children with disabilities.

The Philadelphia eagles opened a sensory room for fans with autism at their home stadium, Lincoln Financial Field—one of the first sports franchises to do this. The 500-square-foot room has noise-cancelling headphones, fidget tools, verbal cue cards and weighted lap pads.

Photo: Philadelphia Eagles

Nashville author Jeremy Scott has created a series, The Ables, in which the characters all have super powers and disabilities.

"Did you know that Individuals with Disabilities Education Act (IDEA 2004) requires IEP teams to consider the assistive technology (AT) needs of all students with disabilities?" posted Education Team Allies. They shared this great graphic from NC's Parent Center.

Add caption

ICYMI: A girl in a wheelchair spots a model in a wheelchair—the story behind the viral photo.

Oh, and Japanese artist Ryo Yamakazi makes hats for cats out of their own shed hair.

Photo: Ryo Yamakazi

Monday, August 19, 2019

A girl in a wheelchair spots a model in a wheelchair: The story behind the viral photo

The photo of a girl in a wheelchair staring at an Ulta ad with a woman in a wheelchair has drawn a lot of attention, and props. Mom Carolyn Kovacs Anderson posted her daughter's reaction last week to this image at an Ulta store in Leesburg, VA. As she wrote, "Well, Ulta, you absolutely stopped my girl in her tracks this evening. It was mesmerizing to watch her stop, turn, and gaze at this poster. So thank you."

The girl's name is Maren, and she is four years old. Her mom and I messaged, and she described her as a "dance-loving, babydoll-toting, bike-riding little girl with the most infections giggle and smile!" Maren has a rare disease that has lead to global delays. "Since day one, she's shown great motivation and tenacity.... All she wants is to be accepted for who she is, and represented like everyone else."

Like many little girls, says Carolyn, "Maren enjoys playing with pretend makeup and baby products, especially on her beloved baby dolls!" The evening the photo was taken, Maren was out in her new wheelchair—she'd practiced maneuvering it for 12 weeks, and had recently become comfortable using it in public. "Maren was cruising in her wheelchair with a confidence we had not seen before. She was so eager, we could barely get her to stop at crosswalks!" says Carolyn. "Then, she suddenly stopped and focused all her attention on this image of a woman in a wheelchair like hers. It was amazing."

The beautiful woman in the Ulta photo is Steph Aiello, a makeup artist, childcare teacher, vlogger and member of The Rollettes, a Los Angeles wheelchair dance company. Steph is featured in Ulta's fall campaign in both store posters and the catalog, too.

As companies have increasingly featured adults and children with disabilities in print ads (and, more rarely, TV ads), we parents have cheered. We want our beautiful children to be included in the media and every aspect of life—and we want them to feel included. Seeing people who look like you is validating and empowering, even more so for children with disabilities looking to find their place in this world. As Carolyn says, "Maren got to see herself in this picture, and that planted a seed for her to see that there is a place for kids like her in this world. She was included.

"We are grateful to live in a community that accepts and supports our daughter," Carolyn continues. "However, we are also aware of the challenges to being fully included that our family, and so many others with complex medical needs and disabilities, face. We are teaching Maren how to advocate for herself as members of the Little Lobbyists, who advocate for protection and expansion of her rights. Despite having a pre-existing condition, Maren, like everyone, deserves access to healthcare, education and community inclusion.

"It is our hope that families who see images like the one at ULTA will have a continued dialogue with their children about inclusion. Our wish is that one day it won't be newsworthy to see our daughter and other people with disabilities represented, it will be commonplace.

"We hope that Maren's awestruck reaction to this advertisement inspires more inclusion and representation of the disability community, and highlights the need for continued progress. We want Maren to always know that she belongs everywhere—everyone deserves to live in a society where they can be themselves and thrive."

Image: Carolyn Kovacs Anderson

Friday, August 16, 2019

The Disability Blogger Weekend Link-up: your summer reading

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: A child with disabilities kicked out of a restaurant

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. Thanks for stopping by!

Thursday, August 15, 2019

The awesome photo that celebrates babies of all kinds

I absolutely love this portrait of three moms, posted by Henderson, Nevada maternity/newborn photographer Felicia Saunders in honor of National Breastfeeding Month—because it's beautiful and because it's  beautifully inclusive. There's one mom nursing, one mom bottle feeding and one mom feeding her baby via a G-Tube (aka a gastrostomy tube, a surgically-placed device that provides access to a child's stomach for feeding, hydration, or medication). As Saunders wrote, "I just want to say that no matter your choice of feeding you are absolutely amazing!"

As I stared wondrously at these moms and their babies, I thought of the guilt I'd had about feeding Max when he was a tot. Dave and I knew Max was at risk for a lot of challenges from the stroke he'd had at birth, but nobody at the hospital had mentioned eating. We'd been told it was amazing that he could swallow and it was: His brain stem had been spared damage. As it turned out, though, his sucking mechanism wasn't working so well and there was also a lack of coordination with swallowing. A nursing session could take an hour. When I pumped and fed him by bottle, I'd have to pad his little chest with cloth bibs because a lot of the milk would dribble right out. When Max went on solids, he'd also dribble out the vast majority.

I was shocked that something as seemingly simple as eating could be a challenge. This was in the early days, before I found out that other things that came instinctively to babies—from picking up a Goldfish cracker to holding a ball—would have to be taught to Max. He was perfectly cheerful about how long it could take to eat and he got adorably chubalicious but I felt pained by the fact that I couldn't feed my baby like babies were "supposed" to be fed. It got to the point where Dave would do a lot of the feeding because, unlike me, he had no anxiety or guilt about it.

Oh, man: Those "shoulds" will get you every time. As in, the way your child "should" eat/drink/behave/move/think/play/everything. Feeding a child is such a primitive instinct of motherhood, and watching Max struggle made me feel like less of a mom.

Years of feeding therapy would follow to help Max process food and liquids, and he progressed. He learned to chew pieces of food on his back molars. He figured out how to grasp utensils and feed himself. He found a way to hold a cup and control the liquid so it didn't go down his throat all at once. It was amazing. He still can't eat crunchy foods like potato chips or hard or chewy ones unless they are bite-sized, but he does just fine. He's going through a steak phase (the mac 'n cheese phase: SO MUCH CHEAPER) and we cut meat into bits and he forks it up with a giant smile on his face.

If only I could go back to that worried mom I was all those years ago and reassure her that babies eat and drink in different ways, and that it is OK. We moms need to feel the kind of positivity and acceptance that shines through the photo of those three mothers and their babies. As a mom said on the photographer's Instagram,"I'd planned to be the mom on the right, then I hoped I'd be the one on the left. In the end I was the mom in the middle, and spent so long feeling like I'd failed. Thank you for sharing this to hopefully help other moms who might be struggling."

Wednesday, August 14, 2019

Almost wordless Wednesday: Max is back

When your teen comes home from camp and he is taller than you and although that is not that much of a feat given that you are five foot two, STILL.

Tuesday, August 13, 2019

A child with disabilities kicked out of a restaurant

You've heard this story before, because it keeps happening. On a recent weekend, two parents and a child visited an Outback restaurant in Maryland. Their four-year-old, as mom Amanda Jean Braun shared on Facebook, has a neurological disorder called apraxia. "This disorder affects Killian in many ways especially communication and behavioral. He is a very energetic with much to say, however when he speaks his words are unclear."

My Max has apraxia. I know what he's saying but sometimes, others don't. This can rub people the wrong way, especially when he's talking in a louder voice. Amanda's son rubbed someone the wrong way that day. The manager showed up at their table shortly after their food was brought out, noted that he'd received a noise complaint about Killian, and said that unfortunately they needed to finish their meals and leave. He gave them a $20 credit as a consolation prize.

Corporate later apologized in a statement, reports The Washington Post: "We strive to make sure all guests feel comfortable and welcomed in our restaurants and we fell short. We're learning from what happened and training our team so we can better serve our guests and population."

This is mind-boggling on so many levels. First up: that a customer was so distraught by the voice of a young child. Couldn't that person have just focused on enjoying the food and the people they were with? Couldn't that person have asked for another table? Couldn't that person just have had even a smidgen of acceptance? It's also outrageous that a manager would think the rights of the customer who complained superseded those of this family—really, he should have given the person who complained a rain check (make that "complain check") and told him to come back another time.

HELLO, discrimination.

I'm thinking back to a story from several years ago, in which a restaurant patron asked to be moved away from a family that had a child with Down syndrome. After the complainer commented "Special needs children need to be special somewhere else," the waiter flat out refused to serve him and the restaurant stood behind him.

Now, I'm not saying that restaurants should allow every child with special needs to stay put—if they are having a tantrum or screaming or running around, it's acceptable to ask a parent to step outside with that child, same as with any child. But that didn't seem to be the case this time around.

Intolerance of children with disabilities who have speech challenges can really flair up at restaurants. I can recall another story from years ago in which a mother told a waiter that their meal was OK "Except for the retard in the next booth ruining things by making noise, everything is fine." She was referring to a child with autism nearby who was squealing and repeatedly saying he was hungry. Yes, someone said that.

More restaurants need to offer training for employees about handling situations like this and accommodating children with disabilities. As these incidents make the social media rounds, hopefully they will force restaurants to pay attention. As for people who can't accept the wide variety of behavior that is humanity, well, they may not be able to digest awareness and acceptance, but the rest of us can keep right on serving it to them.

Flickr image of a restaurant/atmtx

Monday, August 12, 2019

Those moments when you think your child will be OK without you

Last week, I read a great article by the mom of a child with cerebral palsy who had one of those "he'll be OK without me" moments. I totally related. Jamie Sumner's son, Charlie, is mostly nonverbal; he uses a speech device. He'd gotten a t-shirt with emojis on it and as she put the shirt on him and discussed going to the pool during camp, he pointed to the emoji with sunglasses on that said "awesome." Later, when she picked him up at camp, he again pointed to it and to a snoozing face. And that's when she realized that Charlie was telling her camp was awesome and that he was tired.

"As his mother, I fight for him to be understood and included at places like school and camp," she writes. "Moments like these, when he does it all on his own without my help and with such adeptness, are the ones that let me know he will be just fine, even when I am not by his side."

I've had these moments throughout the last several weeks, whenever I've seen photos or videos of Max at sleepaway camp. He's looked ecstatic, living his best life without me present. Few things make you happier in life then knowing your child is doing fine without you. It's how I've felt when Max has done everything from taking walks in our neighborhood to putting his dirty bowl in the sink for the first time. I got a big burst of he's-gonna-be-OK when he began communicating through his Apple Watch this year.

It's not that I don't think Max is capable of independence; I feel certain he will achieve that to the best of his abilities. He's got the determination, the will and the smarts. I just know that he will need someone to lend a hand with certain things, and it's hard to imagine that it won't be us who are there for him, as we always have been. Cutting the old apron strings is that much harder when you have a child who's grown up with many needs.

These he'll-be-OK moments and milestones don't add up to anything right now; who knows what, exactly, the future holds for my boy. Slowly but surely, though, he's showing us the way. 

Thursday, August 8, 2019

I will follow you will you follow me?

"I will follow you, will you follow me" are lyrics from one of my favorite songs of all time, by Genesis. In other news, this post is all about following each other on social media because the more places we can meet up, the better. So, here's my info. Feel free to share yours in the comments below. If you have a blog, leave a link!


Also: Random picture of my kids on camp visiting day.

Wednesday, August 7, 2019

This viral video gives people all the feels but is that really a good thing?

This video of a six-year-old with cerebral palsy at a water park, posted by his big sister last week, has gone viral. It shows the most ordinary thing in the world: friends helping a friend. The thing is, it's not so ordinary.
I know why this girl was so thrilled. It is all too easy for children with disabilities to get left behind or left out of the fun, as I know from my experiences raising Max. "It made me so happy that kids his age were able to see beyond a disability and just wanted to help their friend have fun," Mikaila told Fox 5. "Instead of running ahead of him to get on the water slides they made sure he wasn't left behind."

When we went to birthday parties when Max was a little guy and not yet walking, the other kids would zoom by him, oblivious to his presence. At the park, kids might stare curiously but none would approach to include him in their play. It was typically me who'd initiate interaction.

That's a problem.

I can understand, too, her appreciation that her brother with CP has friends. Max is one of the more cheerful people on the planet and yet, he has never had close friends. He is friendly with the kids in his class,  with my friends' children and ones who have partnered up with him through programs. But not a BFF.

That's a problem.

I can also get why this video appeals to the masses: It makes some people feel good to see kids being nice to a child who people might consider unfortunate or pitiful because of their disability. When videos make the rounds because people elevate ordinary acts into heroic ones, it's a phenomenon known as "inspiration porn." Writer/activist/speaker Emily Ladau recently did a great piece on it for New Mobility magazine. "People can read or watch inspirational stories, click the 'share' button, and go on with their day," she writes. "But what happens after the quick hit of warm, fuzzy feelings? They may be moved to grab tissues in that initial moment, but most likely sure won't be motivated to take real action."

That's a problem.

Obviously, when you are a loved one sharing this stuff you only mean it in the best of ways. You're overjoyed for your child, your brother, your sister. You know what the realities of life can be like for them, and it's a thrill when the opposite happens. I've written here about people doing seemingly ordinary things for Max, like that time a family in our neighborhood was taking a walk and offered to let him come with them. If this were typical, I wouldn't have written about it. But it's not typical.

As parents of children with disabilities and their siblings, we'll certainly continue to express our happiness for our loved ones when Good Stuff happens. But perhaps, instead of just heart-ing a video or sharing it, people can press the pause button in their heads and consider just why they are so moved by a video of other children helping a boy with CP into a splash pond.

Ask yourself these questions:

What does this post or video say about how I view disability?

If the object of this video was not a person with disabilities, would I feel the same?

Wouldn't it be great if what happened in this video was typical—so much so that it wouldn't merit  viral-ness?

What can I do to help?

Perhaps those of us posting videos celebrating moments like this can ask viewers to consider that the world needs to be a generally more welcoming place for our children, or however you'd like to phrase it.

Perhaps parents of children who don't have disabilities could use the video as a learning opp; it could be the kickoff for a great conversation about lending a hand as necessary to others and also about the ways children with disabilities are like them.

If you choose to share a video like this, perhaps you could tack on a remark like "Wouldn't it be great if this were such an ordinary thing it didn't go viral? Encourage your children to treat ones with disabilities like any children, lending a hand as necessary" or some such.

Emily Ladau offers this advice: "What if...we stopped to consider if the story we're sharing truly empowers the disability community? What if, instead of expecting our community to accept how the world sees us, we expected the world to welcome disabled people as we are? What if, instead of perpetuating clichés and stereotypes, we celebrated the human body in all its forms and functions so that no one would ever feel like they're not enough?"

Think about it.

Related: I wish this viral video hadn't made you cry

Tuesday, August 6, 2019

This post is brought to you by pure joy

Could he be having a better time at camp?!


That is all.

Monday, August 5, 2019

A school gets a facility dog to help students with disabilities

It's one of those stories that makes you think: Why doesn't this happen more often? A high school in Mukwonago, Wisconsin will soon have a facility dog on staff,  thanks to special ed teacher Sue Bachofen. She adopted Champ, an 18-month-old English yellow lab, from a guide dog association last spring, reports the Journal Sentinel. Because Champ had some issues with his elbow, he needed a career change—and he's found an awesome one.

Sue thought that Champ could be great for special ed students with depression or social anxiety, because he could give them something to look forward to. Therapy dogs have been shown to have physical benefits (they can reduce blood pressure and help with pain management); cognitive benefits (they can stimulate memory and problem-solving skills) and social ones—they can lift moods in classrooms and have been shown to make youth with autism feel more at ease, notes

This week is International Assistance Dog Week, created to recognize all the devoted dogs out there helping people with disabilities. There are a number of organizations around the country that help train and place facility dogs (which can also assist in group homes, nursing homes and health facilities), including Paws'itive Teams in San Diego, Pawsitive Perspectives in Lakeville, MN, Dogs for Better Lives in Central Point, OR and Canine Companions for Independence, which has locations nationwide.

Champ will be at Mukwonago High School to greet students when they return after summer break, and he's bound to get an enthusiastic welcome. As a student wrote in his final exam, "One of the only things that could make school better is by getting that dog in here for me to pet so I can feel someone cares."

Photo: jsonline video

Friday, August 2, 2019

The Disability Blogger Weekend Link-up is enjoying summer

Exactly what to do, if you're new  

This is a place to share a recent favorite post you've written or read. Scroll 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 (or just the name of the post, if there's no room—you get 80 characters).

Like this: A pizza place staffed by people with disabilities takes off after dealing with hate

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. Thanks for stopping by!

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