Friday, September 13, 2019

The Disability Blogger Weekend Link-up: you read that right


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: An autistic man uses his iPad to speak at the 9/11 memorial service

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, September 12, 2019

An autistic man uses his iPad to speak at the 9/11 memorial service


When William Aronow was a little guy, his father, Richard, had a dream of creating a school for autistic children like his son. Richard was the deputy chief of the Port Authority's law department and on 9/11, he was working on the 84th floor of the World Trade Center's North Tower when the plane attack started. He did not survive. William was 4 at the time.

Yesterday morning, at work, I clicked onto the 9/11 memorial service and started weeping. A few minutes later my friend Wendy texted me a video she'd taken earlier on in the service; she thought I'd want to see it. I watched as a young man used a speech app on his iPad to articulate the names of people who died on 9/11 and to pay tribute to his father. That young man was William, now 22. Suddenly, I wasn't crying. I was floored and awed by the poise of this young man and the power of augmentative communication, which has also given my Max a voice.


I'd later find out that the woman holding the iPad was his mom, Laura Ann Weinberg. She became a speech therapist. She shared her pride for her son on her Facebook page: "He has been using touchscreen voice output devices since 2011 and gets better at it every year. He practiced and said what he wanted to say!" Laura also spoke of the challenges she'd encountered early on getting William an AAC device. "He didn't qualify for a voice output device for 6 years during which I knew he was at least partially literate. He'd find calamari on a menu and show it to the waiter!" And now, she noted, "technology has finally caught up with our son, and he has a real voice."

I shared the video on Facebook, and it was clear from the comments that, like me, many parents of children with disabilities as well as teachers and speech therapists were so, so proud of William, too. Some noted the extreme control he'd shown on stage, in front of the large crowd. "To some, you might just see a young man standing there, but to an autism parent we see more than you can imagine. I see a young man full of courage working through his anxiety and looking up at his uncle because he was proud of himself," said New Jersey mom Nikki Goldywn. "Every year I see something new from 9/11 that breaks my heart a little more," said Dayna Liebman, a woman in Florida studying to become a speech pathologist. "For the first time I've found something to smile about while honoring all of the lives lost too soon."

On the most somber day of the year, the names of the deceased streaming out of William's iPad were as potently articulated as any. His words to his father—"I love you very much" and "I miss you"—were as emotional and moving as any. William's presence on stage sent a message: People with disabilities should be included in every aspect of life—grieving, too. His use of his speech app also spoke volumes. William was there to commemorate the dad he loved and lost, but in doing so, he showed the world that voices come in all forms.

RIP, Richard Avery Aronow. I hope your son's voice made its way to you.


Image: Laura Ann Weinberg

Wednesday, September 11, 2019

Say her name


This girl would have been turning 47 in October. She is Melisa Reneé Vincent, she worked on the 102nd floor of 1 World Trade Center and she died on 9/11. Melissa lived in Hoboken, NJ, as I did in my twenties. I'd seen her beautiful face on "Missing" flyers around town. Six years ago, I did some digging, found her name, learned a bit about her and vowed to always remember her.

Today marks 18 years since the two planes struck The Twin Towers, another flew into the Pentagon and United Airlines Flight 93 spiraled from the sky into a field in rural Pennsylvania. This morning, en route to work, I stopped by the tree at my train station planted for the two people from our town who died on 9/11, commuting parents just like me. Soon, I will tune in to the reading of names held at the 9/11 Memorial & Museum and beam hugs toward their loved ones. I will observe the moments of silence. I will think back to being on the ferry from Hoboken to New York that day and seeing smoke pouring out of the North Tower, the one where Melissa worked.

If you did not lose someone you knew or loved on that day, if you haven't visited the 9/11 Memorial & Museum (I still haven't) and its Wall of Faces, perhaps the victims you saw on flyers, in the newspapers or on TV back then have morphed into a sad blur. Like many, I will pay tribute to these 2983 souls as a whole. And I will think of Melissa and keep my memory of her alive.

I'd read that she liked Broadway shows. This year, in her honor, I donated to Rosie's Theater Kids, a nonprofit that enables low-income students to enjoy performances and attend musical theater classes.

Melissa, I will not forget.

Tuesday, September 10, 2019

A new program trains people with disabilities to be aides for people with disabilities


Yesterday I read about an academy in Washington, D.C. that is training young people with autism and intellectual disability to become aides. Called Direct Service Professional Academy, it aims to give career opps to people with disabilities and help with the shortage of home health aides, reports Disability Scoop. One class of high school seniors has already graduated, and 12 students are currently enrolled.

"I'm going to love this job because I've been through it," and I know what it feels like to not be supported," says 18-year-old student Carmela Mack, who is hearing impaired, "I can connect with them because that was me."

During the 120-hour, six-week course, she and her fellow students learn about the history of disability rights, along with how to plan activities and coordinate public transportation. There are also sessions on health, wellness and other topics. They graduate with the skills and certifications they need to become a Direct Service Professional (DSP).

The Academy is run by RCM, a company that provides support to people with disabilities. It is funded by Washington's Department on Disability Services, and is free to participants. Graduates who go on to become aides are usually paid through Medicaid.

The program makes all the sense. Some people with disabilities need a helping hand. Many people with disabilities need a job—and they'd bring with them a special level of understanding and empathy. Why not match them up?

Total win-win.

Monday, September 9, 2019

No matter the disability, all children have the ability to....


"No matter the disability, all people have the ability to dream!" That's the winner of a caption-the-photo contest Special Olympics recently held, submitted by one Abigail from Pennsylvania. Maybe that's not news if you're the parent of a child with disabilities, but it may not be obvious to others.

This weekend, I had a conversation with a friend who was visiting about how having a child with cerebral palsy had opened up a world to us that I'd likely not have otherwise known a lot about. As Max's mom, I've taught him so much—but he's taught me so much, too.

No matter the disability, all children have the ability to communicate in their own way, whether with words, movements or their eyes.

No matter the disability, all children have the ability to enjoy.

No matter the disability, all children have the ability to have firm preferences and opinions. And to be quite stubborn, too.

No matter the disability, all children have the ability to be cute, adorable, handsome or beautiful—the same as any child.

No matter the disability, all children have the ability to be devilish or naughty or non-angelic. (See: "the same as any child.")

No matter the disability, all children have the ability to experience a range of emotions.

No matter the disability, all children have the ability to dislike when people talk about them as if they aren't right there.

No matter the disability, all children have the ability to want to belong.

No matter the disability, all children have the ability to feel loved.

No matter the disability, all children have the ability to love.

No matter the disability, all children have the ability to.....

You tell me.

Image: Special Olympics

Friday, September 6, 2019

The Disability Blogger Weekend Link-up: share here!


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: This is what goes through your head when your son wants to wear nail polish

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!


Wednesday, September 4, 2019

A place for kids to practice life skills, a Starbucks barista learns sign language for a customer and other great news


A weekly roundup of news, events and Good Stuff.

Disney Cruise Line has debuted 46 accessible shore excursions in 39 ports around the world. It's not just magical, it's about time! Wheelchair Travel has a list of the excursions.


LifeTown will officially open in Livingston, New Jersey next Monday, a recreational, therapeutic and educational center. Its centerpiece: a downtown replica with a bookstore, a clothing store, a nail salon, a bank and more storefronts where youth with disabilities can practice life skills and get job training. Staffed by volunteers, Life Village will be open to public programming. There's a similar village in West Bloomfield, Michigan. And yep, that's Max pedaling around—there's lots of space for fun, too. (Image by Ed Murray for NJ Advance Media).

Dental schools in the U.S. will be required, starting in mid-2020, to train students to work with patients with intellectual and developmental disabilities, reports DisabilityScoop.

In case you missed it: LEGO released audio and Braille instructions, the brainchild of one blind man and the babysitter who made sure he had access to the same fun other kids did. Here's the story.

Last, this. ❤️

This is what goes through your head when your son wants to wear nail polish


Hmmm... They put nail polish on him at the program he was at. He's pretty excited about it. Of course it's red, perfect for an aspiring firefighter

How do I feel about this?

Not sure. 

It's so old-school to think that boys shouldn't wear nail polish.

Still, it doesn't seem like wearing red polish will do him any favors. He already gets stares.

But HE likes it.

OK, then. Let it be. 

A couple of weeks go by. The red nail polish sticks around. Max's toenails have been gnarly ever since he got home from camp so Dave takes him out for a pedicure/foot rub (Max really enjoys a good foot rub). Dave calls me from the salon.

Dave: "Honey, Max wants red nail polish on his toes."

Ohhhh. 

Gut check. Gut check. Is this really OK? 

Me: "What if he gets red on just his big toes? See what he thinks."

Dave: "Sounds good."

When Max comes home, he proudly shows off his two big red toes. In the days that follow, I continue to ponder the pedi situation.

So what if people stare at his feet? 

Would ten red toes be any worse than two? 

What kind of random solution was that? 

Max is almost seventeen.

OHMIGOD HE IS ALMOST SEVENTEEN. 

He has firm opinions and a desire to express himself, same as any teen. And I need to respect that and
repress my I-know-what's-best-for-him instincts and quit worrying so much about him fitting in. Max isn't self-conscious about his disabilities or his toes. 

I've been paving roads for Max his entire life, but it's time to let him lead the way. 

Really, ten red toes are not going to make or break how people perceive him. Some will see and appreciate all of Max—his personality, his disabilities, his giant smile, his smarts, his toes, the whole shebang. Some will see a person who doesn't seem "normal," with or without the red nails. That's their problem, not Max's. And they don't deserve the pleasure of hanging with him.

Hello, it's not like he asked to get a tattoo of a firefighter. Nail polish comes off.  Besides, chilly weather is coming. Nobody will even see his toes, except him. And they'll make him  happy. 

I owe this boy a pedicure do-over. 


Tuesday, September 3, 2019

Guess who Keanu looks like?


My friend Joanna shared this photo with me yesterday. And, yep, Keanu Reeves looks like Max, lucky guy.


I think this bodes well for Max's master plan to move to Los Angeles.

That is all.

Friday, August 30, 2019

The Disability Blogger Weekend Link-up: Labor Day Weekend edition


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: Service dogs see a show to learn how to behave in a theater

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!


Wednesday, August 28, 2019

Relief for worries about your child with disability's future: Here you go


Last week Andrew Pulrang, a wise and kind disability blogger I've connected with online, wrote a great piece for parents.com about why he's optimistic about kids with disabilities today. It was seriously inspirational. But there was one point he made that was a real perspective changer for me.

Andrew raised the questions many of us parents have: How can a child who can't walk or feed themselves ever hope to live a typical adult life? How can a child who can't speak or dress themselves or who can't manage simple finances ever get married, get a job, or even go to the store on their own? 

Yep. These questions have been on my mind since Max was a little guy, and they press on me even more as he's gotten older. At times, they have me lying in bed, awake and anxious.

Andrew went on to give answers. "The type of one's disability does not determine their potential for independence and happiness," he said. He noted that true independence isn't about total self-sufficiency or doing everything for yourself but, rather, living life on your terms with the right support and adaptations: "People with disabilities can achieve meaningful independence, whatever it may look like for that given person."

As parents, we get used to figuring everything out for our children. We so desperately want to enable them, help them reach their potential and make sure they are included in all that life has to offer in a world that doesn't always make it easy for them. And you are so grateful for those times when they flex their independence. In recent history, I've been gleeful about everything from Max taking his own dirty bowl off the table to going for a walk on his own in our neighborhood.

But one giant step toward a child's independence is your own step, as a parent, to realizing that making it happen will be a joint effort. As fierce and fearless as you have been about ensuring that your child gets what he needs and deserves, there will come a time when your child can let you know what it is he needs and deserves to thrive. This is a major mindshift. You need to transition from the person who has been making the decisions on your child's behalf to letting your child steer their life.

This is not to undermine the major undertaking that it will be for your child to someday have an independent life, or how worrisome it can be. There are so many questions, including the biggest ones of them all: Will my child live away from us? What sort of independent living situation might work for him? How will we swing that financially? But then, it is a relief to consider that while you will be doing the legwork, you will not be alone; your child can and should participate in the decisions, big and small.

Decision-making is empowering for children of all ages, and we've always tried our best to involve Max. Before he could speak words or use augmentative communication devices, we had a three-ring binder with different sections—food, toys, clothes—and pages of laminated photos I'd taken and PECS pictures that he could point to. The biggest decision we've made in recent years is choosing a high school for Max. I made a list of possibilities; Max toured every single one and shared his thoughts. Emotions, too; he so loved one school that when it came time to leave, he stood in the lobby and sobbed as the principal patted his back and said "Max, I think you'll be coming here." And he did.

Whatever the future holds, as overwhelming as it can seem, the load on your shoulders will feel lighter when you consider that that the future shouldn't be your idea of independence—it should be your child's. Because after all, that's what matters most.

Thank you, Andrew.

Tuesday, August 27, 2019

When your child with autism gets a best friend


This guest post is by Jane Kim, an immigration attorney, writer and mom of a seven-year-old with autism. The family lives in the Philadelphia suburbs. 

What a difference a year can make! This past year has been the most exciting for all kinds of reasons: My son, who has autism, learned to skateboard and ride a bike, he lost a tooth, he started loving school, and he got a bestie. It all took me by surprise, but I could not have imagined the last development.

About this time last year, I wrote about my son's first playdate and my hopes that he’d have and maintain friendships, despite not having playmates in his early years. He started kindergarten last fall, which is a half-day in our school district. There is an Autistic Support Program (ASP) offered in the morning, where 10 kids (all boys) from across the school distric convene at one elementary school to learn the kindergarten curriculum, focus on social skills and participate in individualized therapies including speech, OT and PT. In the afternoon, the kids split up into two general education kindergarten classes where they incorporate what they learned in the ASP. My son has thrived in this setting, and watching him come out of his shell has been nothing short of magical.

My son and B were in the same ASP class. B’s mother, a Homeroom parent, did a great job of inviting the boys and their moms to her house, while connecting other parents with each other. I’m thankful to her, as a mom that often doesn’t have the time to get to know other parents, for her inclusive approach at the beginning of the school year. I wish there had been more moms like her at my son’s preschool.

In the beginning, a decent amount of thought and planning went into each playdate. My son’s wonderful behavior technician, Christina, and I would brainstorm different activities we thought both boys could enjoy, while also trying to incorporate some of the skills and/or behaviors my son was working on (such as increased independence with staying on task, turn-taking and asking questions) as part of his ABA programming. Some of our ideas included “story time,” riding scooters around the neighborhood, board games, try-and-find worksheets and freeze dance.


Some ideas worked, others fell flat. I discovered their abilities were quite varied. One could read, the other was starting to learn. One was quite conversational, the other was less so. One was potty-trained, the other was working towards it. One had fine motor challenges, the other didn’t. But what one couldn’t do, the other was supportive and remarkably patient. Their strengths and challenges were apparent, and they didn’t make it a big deal.

As the playdates became more frequent, there was less and less adult planning. Instead, they chose to share with one another what they enjoy doing on their home turf. One of B’s favorite pastimes is walking to Wawa for blue slushies. My son enjoys riding his scooter to the train station, and guessing which trains come next – Amtrak or Septa. Other kids—perhaps neurotypical kids—may not be so willing to participate in these eclectic interests, but these two don’t bat an eye.

“Eat your broccoli!” B says at dinner. “Make sure you wash your hands!” my son declares after B uses the bathroom. There’s lots of silliness and being LOUD.  Recently, they’ve started talking on the phone.

For much of his life, my son was a passive participant—he didn’t tell us what he wanted to eat, wanted to do, what he enjoyed. He was an incredibly compliant child, and I longed for him to say something conversational, to assert his opinion, to challenge his Dad or me. So to listen to him tell me he wants to see B, while offering ideas for playdates, has been remarkable.

Their playdates have expanded to include other kids from the ASP class—there have been group skateboarding lessons, birthday parties, meeting at area parks. I’m hoping they can maintain these friendships during the upcoming school year, when they enter first grade, as they continue their schooling in their home elementary schools. This is an amazing group of kids that have bonded and supported one another and to put it simply, have felt as if they belonged. I give kudos to our school district for piloting an ASP classroom where kids can familiarize themselves with the school routine and learn amongst other kids similar to them…but why should the road end here? I’ve been told that the home schools are more than equipped to address each kids’ individualized needs, but what about the intangible benefits of feeling like part of a group?

We all want our kids to learn, but school is not just about academics. It's about navigating social relationships, teamwork and feeling like a part of something bigger than yourself. Many kids on the autism spectrum struggle with this, and it's a large part of what is missing from their lives, and their families lives. As my son has formed friendships and slowly come out of his shell, some of my own wounds have started to heal as well.

As parents, we all want our kids to thrive and to live up to their full potential. If they seek out and desire friendships, these friendships undoubtedly enrich their lives. In my life, thriving has meant having the right opportunities and the necessary support systems in place. I’ve been fortunate to have wonderful people throughout my life, starting with my parents that raised me, and then later as an adult in my home and work life and in my community. When going through transitions or making difficult decisions affecting my son’s programming and education, these people have listened, challenged and comforted me. They helped me thrive, and I want nothing more for my son to experience similar support systems, if this is what he needs to be fulfilled.

At the end of most playdates, as we’re saying our goodbyes, my son and B hug and tell each other they love one another. I get the same flurry of questions: When can they see each other again? Why can’t one of them stay? Can’t they play for just one more minute? Sometimes, I’m separating the two of them, and there are tears. There’s no judgment, just love and affection and wanting to stay in that moment.

This post is dedicated to my besties, my sister (at left, with me) and MT.


Find Jane on Twitter @JKimRites

Monday, August 26, 2019

Service dogs see a show to learn how to behave in theater and other stuff happening out there


A roundup of information, inspiration and stuff to make you smile. Plus: COCONUT CREAM PIE.

Loving the above photo from Canada's Stratford Festival of service dogs at a performance of Billy Elliott hat featured quieter sound effects and lighting for those with special needs, so they could get familiar with theater and know how to navigate crowds. 

Sign language interpreter Amber Galloway Gallego gets a shout out from Twista, one of the world's fastest rappers, for a job well done at a recent concert. 

Surf Style, a popular beachwear company in Florida, features a person Down syndrome for the first time in an ad campaign—16-year-old Ethan Holt—and the Internet goes wild. It was done in collaboration with Help Us Gather, which connects individuals with disabilities to social events in Tampa. 


Great post on Chalkbeat about how the lingo and jargon of IEPs can exclude parents from the IEP process. 

ICYMI: The masks special needs parents wear—sound familiar?


The Peanut Butter Falcon is getting great reviews; the comedy-drama is about a man with Down syndrome who runs away from a residential home to become a wrestler. As my friend Amy Silverman, mom to a daughter with Down syndrome and author of My Heart Can't Even Believe It, says, "See it if you have someone with Down syndrome in your life and even more important, see it if you don't."

A Facebook friend recently made this Coconut Cream Pie, created by Sally's Baking Addiction, and said it was amazing. I mean. 

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!

Facebook: https://www.facebook.com/lovethatmax
Instagram: https://www.instagram.com/love_that_max
Twitter: https://twitter.com/LoveThatMax
MaxTube: https://www.youtube.com/LoveThatMax
Pinterest: https://www.pinterest.com/lovethatmax/

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

Tuesday, August 6, 2019

This post is brought to you by pure joy





Could he be having a better time at camp?!

Nope.

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 therapydogs.com.

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!


Wednesday, July 31, 2019

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


Pizzability in Denver, CO has delicious pizza and equally outstanding employees. Run by former special education teacher Tiffany Fixter, the restaurant is staffed by people with disabilities. Yet not everyone finds it appealing, as local TV reporter Tori Mason discovered after an interview with the owner. As she shared on social media:

"Pizzability is a restaurant that hires workers with special needs. The owner tells me people stand outside and say they're afraid to come in. People walk past and say 'that's where the retards work.' The employees can hear them. Please give them your business and your tolerance."


Mind-boggling awful, right? A lot of people agreed. The post has been shared more than 6000 times and people have been flocked to the restaurant, which has been open since December. "There are days where we sell two slices of pizza," Fixter said. "We've never been so busy. I'm exhausted, but it's great."

Previously, Fixter started Brewability Lab in Denver, a brewery that employs and trains adults with intellectual disability for job opps in the beer business. "I realized there's an employment crisis for adults with developmental disabilities," she told Diverseability Magazine. "I wanted to try to solve that."

Over at Pizzability, there's a visual menu that's available in braille. There's also a sensory corner with noise-cancelling headphones, adaptive utensils, cups and plates and a quiet room in the back for employees who need it. There's a reason the restaurant was honored as one of 50 Game Changers by the Special Olympics.

Pizzability is located at 250 Steele Street #108 in Denver. Stop by if you're in the hood! I especially liked the reporter's subsequent suggestion: "Take all your blind/Tinder dates here. If they say anything remotely rude, go to the bathroom and never come back. (Just make sure you eat your pizza first)."

Pizza wins. Inclusion wins. Love wins. 



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