Tuesday, April 30, 2019

Don't tell me that motherhood isn't that hard

"Motherhood isn't that hard," says the woman passing by. We have just boarded an airplane headed home from London and Ben is attempting to sit next to me even though the seat is assigned to someone else, but try explaining that to a 3-year-old. I keep urging him to return to his seat next to Sabrina.

I look at her. "Oh, are you a mother?" I ask.

She nods to two girls trailing behind her. "These two," she says. "It'll be OK, just calm down." She walks on.

I was already frazzled—getting through airports and loading everyone onto the plane has that effect on me. And now, I am perturbed. Don't tell me motherhood isn't that hard, lady, because sometimes it is. Not rocket-scientist hard, but it sure does challenge you in other ways: your patience, your endurance, your willpower, your sanity.

I may have a child with disabilities who needs an extra hand but on any given day, every single one of my three children has special needs. And I am one of the lucky moms, because my partner and I have jobs and health insurance and a place to call home. Motherhood is extra-hard for moms who lack the income or resources to care for their children.

Over the years, my fellow working moms and I have often joked about how going to an office is far easier than parenting. At work, you have defined rules that people tend to follow. Others listen to you politely, without whining (to your face, anyway). You get to grab lunch, hit Starbucks or take bathroom breaks at your very own will.

At work, you don't have to beg anyone to take one more bite of lunch or to stop sending tidal waves of water over the side of the bathtub or ask anyone to clean their room for the bazillionth time or handle a child having a meltdown in public as everyone stares or attempt to help one child with homework as two others demand your attention or face the hormonal wrath of a teen or struggle to explain math you're not totally clear on or I could go on and on but I could really use a nap.

Motherhood is being a juggler, diplomat, coach, chef, organizer, janitor, teacher, secretary, personal assistant/shopper, housekeeper and motivational speaker EVERY SINGLE DAY. It is putting yourself last, if that, even when you're sick or burned out or exhausted. It is tumbling into bed and being too wiped out to read a page, let alone a chapter, in the book that's been lying on your nightstand for way too long even though it's a really good book.

Motherhood is never taking the day off, because there's just no turning off the endless loop of worry in your head about the kids. And whether they can go for just one more day in their old, no-longer-fitting shoes.

At times, motherhood breaks your heart, whether you are grappling with a child's disability or health issue or come upon a baby photo and wonder how that little guy has grown up so fast. The two weeks that Max spent in the NICU were the absolute hardest ones in my life.

And of course all the blood, sweat and tears are worth it. And my children are the miracles in my life. And they're all sorts of fun. And maybe parts of motherhood comes easier to some than to others.

But that's no reason to judge mothers for those times when they're having a moment.

Image: Instagram/BaseBodyBabes

Monday, April 29, 2019

What not to see in London and have a great time

When in London, you have to see the changing of the guard at Buckingham Palace. And check out the amazing museums—the Victoria and Albert, The Tate, the National Portrait Gallery and, oh, The Churchill War Rooms at The Imperial War Museum are fantastic. And do not miss the Harry Potter Studio tour and Platform 9 3/4 at the King's Cross Station tube stop! Or Hyde Park! And of course, you have got to see Abbey Road.

This is all excellent advice. Unless you are our family and despite all your plans and excellent input from a lovely woman who lives there (thanks again, Tamar!) the reality turns out to be this: nobody except you wants to go to museums or have anything to do with Harry Potter stuff. And as you drive by Buckingham Palace one morning and see the throngs of people, you realize there is no way your child with sensory issues, who also doesn't do very well standing around, is going to deal with that. Said child isn't much into charming markets, either.

Meanwhile, you neglected to plan for the fact that it takes longer to get between spots than is typical because your family has to stand in the middle of the street and argue about where to go next or what to eat, one child walks increasingly more slowly as the day goes on and another must stop whenever there is a map and tell you how to get where you are going and how long it will take even though he has no idea.  

And oopsie, you planned to check out the Houses of Parliament on the day they are closed for Easter Monday. Not that it matters, cause everyone would have been against it. Which is exactly why you also bail on Westminster Abbey. 

So what do you do? 

Decide to kinda sorta follow your plans and go with the flow. Which is pretty much the best advice for all things in life.

On your first day, you do tourism lite and check out a city garden. You down fish and chips at Poppies and attempt to explore Old Spitalfields Market except one of you isn't having it but then all is saved because lo and behold there is an ice-cream truck and one of you decides it is THE best ice-cream truck in the history of ice-cream trucks and you must return to it!  

You take a gamble and decide you're going to the Tower of London, and while one child chooses to screech throughout most of the tour then informs a guard that you deserve to be in jail, a couple of you enjoy tales of the prisoners and one very botched execution by a drunk butcher. 

Then you do an unplanned walk over The Tower Bridge as one of you sings "London Bridge is falling down" most of the way. And the next day you spend a couple of hours at Hamleys Toy Store and chill with the pirate outside.

Three of you visit the The Museum of Natural History (and one grudgingly agrees it's pretty cool, after all) and the London Transport Museum and the wondrous Borough Market food hall, as the other two roam around.

And you do the double decker tourist bus tour and W-I-N—everyone really loves it. And the river cruise: W-I-N  W-I-N! And the zoo: OMGeeeeee EVERYONE WAS INTO IT!

One morning, you have breakfast at a cafe that serves only cereal (the Cereal Killer Cafe) and everyone likes that, too.

Another time, you have breakfast at a really cute cafe and one of you decides to sit at a separate table and hey, whatever.  During a lunch adventure, you take your family to an Indian restaurant (Dishoom) but don't tell the kids what kind of food it is so they can't whine about it and shockingly they all like it

As you wander around on another day, you come upon the Horse Guards, an 18th-century building that houses the barracks and stables for a unit of the cavalry. Turns out they, too, have a changing of the guard which is slightly less of a scene than Buckingham Palace's but still a scene so, nope. But there's a real, live guard on watch. And by some miracle, you persuade two of your brood to check out The Household Cavalry Museum and the lady staffer only chides one of you for playing with a helmet.

En route to the London Zoo, you discover Regent's Canal. Everyone actually enjoys both and wowee, you are on a roll!

One night, four of you head to see School of Rock (happily, a friend has a daughter studying in London who babysits your little guy) and despite one child insisting he isn't into it, could he see it again the next night? Please? 

On another unplanned expedition, you happen upon Kensington Palace and discover The Sunken Garden, a favorite of Princess Diana. It is so gorgeous it almost doesn't seem real. Why can't you have a sunken garden in your own backyard? Ah, the indignities of life as a commoner. 

Of course, there are fire stations to be visited and new firefighter friends to make (shout out to the Soho Fire Station).

Then one of you takes your daughter to tea at Sketch and to check out Liberty London as your amazing partner does a second round on the double decker tour bus and for that, you owe him big-time.

And you meander through the streets near your Airbnb and explore the supermarket and sigh at the elegant Georgian architecture (well, one of you does) and drink hard cider (two of us) and eat yet more fish and chips and ride the tube (when exactly did that voice stop saying "mind the gap"?!) and watch Netflix movies at night and never cease to be delighted by the old phone booths. 

And so things didn't go exactly as you thought they would but you, of all people, should know that they still can turn out pretty great. And that's just the way it was. You ended up seeing a whole lot, and everyone enjoyed themselves in their own way. And so what if the only souvenir one of you wanted was a tote bag that says, "Los Angeles, California."

Thursday, April 25, 2019

The Disability Blogger Weekend Link-up: Spring Break edition

It's Spring Break, so I'm starting the link-up a day early—hope your family is enjoying yours! Or at least staying sane!

What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: The most amazing words I ever heard at an IEP

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, April 24, 2019

The perks of skateboarding for kids with autism

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

My son falls down, looks over at me, then gets back up for another go. This simple act—of trying again, without prompting— is exhilarating to watch. As the parent of a child on the autism spectrum, I spent much of my son’s early years instructing, cajoling and beseeching him to play with various toys and participate in activities when there was little or no interest. Our house was a bona fide kids’ entertainment zone filled with every imaginable plaything, purchased in the hopes that something would spark prolonged enjoyment. I often wondered why he had little interest in toys and games and when he did, why he didn't instinctively know how to play with them.

The stress and worry of those days seem distant when I watch my son’s skateboarding lessons. He never told me he wanted to learn to skateboard, but I had a hunch he’d enjoy it. When he was three years old, my sister got him a scooter as a gift, and he wouldn't let it out of his sight. He quickly learned to ride it and was soon faster and more adept than other kids his age. After riding it regularly for about two years, he began placing his feet on the deck as if it were a skateboard, and started using one hand to steer. He seemed ready for the next step.

We got lucky with Brett, his wonderful skateboarding instructor, with whom he has hour-long weekly lessons. Although Brett has never had experience working with kids on the autism spectrum, he’s a natural. He keeps the lesson light and fun, and is able to adjust the pace of the lesson accordingly. Sometimes, when the skatepark is crowded and the sounds are amplified, my son’s attention wanders. Brett is able to re-direct his attention by doing tricks or giving him a few minutes to watch other kids skate.

Some lessons, there’s a lot of progress (did he really just fly down that ramp?!); others are more focused on repeating actions so he can get the hang of the basics, like bending his knees when he hits the curve in the halfpipe to maintain momentum and balance. With just a few lessons under his belt, he's able to push and get on a skateboard, ride down a ramp unassisted and is working on riding independently in the halfpipe. A halfpipe is a ramp curving up at both ends (in a U shape) and is used for doing tricks on a skateboard.

Physicians and therapists will tell you what is developmentally appropriate for your child with disabilities; test scores will tell you how many standard deviations below the mean your child is. Given this information, at times it’s hard to think about anything other than your child catching up and his challenges. Still, it’s up to us to nurture our children’s strengths, and seek out that information from their teachers and therapy team. Just a couple of key strengths have the power to overcome numerous challenges, as we may well know from our own experiences.

Aside from the physical benefits and the obvious fun factor, I’ve asked Brett if there were any other benefits skateboarding offered to kids. He said, “Skateboarding allows children to explore their creativity. Many skateboarders grow interested in filmmaking, photography, graphic design, music and entrepreneurship, to name a few areas. The sport creates leaders of any realm by encouraging them to think outside the box. Kids who learn skateboarding are also more confident in themselves. They understand that failure – such as falling when trying to learn a trick – is OK, because it’s a sign of progress. Most times, when a child feels most vulnerable is when they are about to experience the awesome feeling of success.”

Who knew that a board with four wheels could help lay the foundation for such life skills?  I sure hadn’t. I’m getting choked up witnessing the look of pride, the increased persistence, and most importantly, the excitement of learning something he enjoys at every lesson.

Brett also mentioned skateboarding gives kids the opportunity to meet new people from different communities and neighborhoods, people they may not have necessarily had the chance to meet. Although kids may initially feel intimidated to go to local skateparks, the love of skateboarding is the common thread that brings kids together.

I was fortunate to spend my formative years overseas, with people who were vastly different from me. Their differences became the norm, and I inadvertently learned to value and embrace them while seeking common ground. The most important lesson I learned is there is always common ground. As a person on the autism spectrum, my son could grow up viewing the world as two distinct groups of people: those on the autism spectrum and those that aren't. But I’ll be doing my best to make sure his view of life isn't this restricted.

My son’s world will grow bigger every time he values differences while recognizing similarities. My son’s perspective will expand every time he hangs out with kids of all abilities and backgrounds and they laugh together and get to know and learn from each other. He might not experience growing up overseas–but perhaps hanging out at a local skatepark won’t be too different, after all.

Jane Kim can be found on Twitter @JKimRites.

Tuesday, April 23, 2019

6 things not to say to NICU parents

This post is by Kelli Kelley, founder and CEO of the nonprofit Hand To Hold. After delivering her son Jackson at 24 weeks, Kelli felt alone and overwhelmed, despite being surrounded by family and friends. She went on to start this peer support network for NICU and bereaved families. Resources include in- hospital programs, articles and blogs, podcasts, social networks, and trained peer mentors. All were designed with the emotional, physical, and social needs of the whole NICU family, including siblings and grandparents. Here, she shares six things never to say to NICU parents. 

Parents who have not had direct experience with a traumatic birth or a newborn’s hospital stay can struggle with knowing how to act, what to say and what to do. Here’s a helpful list to guide you when someone in your life unexpectedly delivers early or has a newborn in the hospital for other reasons.

What not to say: “Why did it happen? / What did you do?”

Steer clear of statements that could be perceived as placing blame. In many cases, the medical reasons for an early birth or specific diagnosis are unclear. It’s as confusing to a parent as it is to you. Educate yourself about the common questions that you want to ask most.

What to say instead: “Congratulations!”
It’s tough when a baby comes early or has complications. There’s usually not a card for that at the Hallmark store. Acknowledge the birth of the baby and think of ways to help them welcome baby to the world. A small toy or stuffed animal to welcome their child, a card or even a thoughtful preemie outfit when they are big enough can be a sweet response.

What not to say: “At least…”

Comments suggesting there is a “silver lining” to a NICU stay can be insulting. These statements range from “at least you can sleep while the baby is in the NICU,” to “at least you didn’t have to endure the discomfort of the last trimester.” 

The truth is, NICU moms still have to get up at least every three hours to pump, and grieving the pregnancy you didn’t get to finish is a very real thing. NICU moms may be experiencing sadness and may blame themselves for their baby’s hospital stay. 

What to say instead: “Can I help with ____?”
Despite a child’s hospitalization, bills must be paid, pets must be fed and older siblings must be cared for. Consider specific ways you can help such as offering gift cards for gas, watching older siblings, arranging lawn care or housekeeping or organizing a meal calendar or a care basket.

What not to say: “When will your baby…?"
”Whether you’re asking when they will come home or when they’re expected to catch up to their peers, avoid comparisons at all costs. It’s important to know that NICU babies grow at their own rate and reach milestones on their own time. Each is unique and not the same for term babies. 

What to say instead: “How are you? / How is your baby doing?”

Ask how they and their baby are doing, then allow them to respond if they wish. Don’t compare, just listen. It’s okay if you don’t know what to say.

What not to say: “She is so teeny!”

It can be jarring to see a very tiny baby hooked up to medical equipment for the first time. Consider carefully what you say. Skip references to baby’s size, as babies born early won’t look the same as newborns. 

What to say instead: “Your baby is beautiful.”

Focus on the positives. Point out family resemblances, expressive eyes or other defining characteristics. 

What not to say: “Aren’t you being paranoid?”

Parents who bring home a medically fragile child have often been given special instructions to avoid crowds and public gatherings to give their baby time to build their immunity. They may ask you to wash your hands more than most, ask you to stay away if you are ill, or they may be absent from social gatherings for an extended time. It’s important to respect their boundaries.

What to say instead: “I’m thinking of you”

Having a child in the NICU for a short or long stint can be isolating. Emails, text messages and other supportive messages can be so uplifting. Checking in and giving the family the freedom to respond in their own time is always a welcome sentiment.

What not to say: “Everything happens for a reason.”

This is a common statement among those who don’t know what to say, but it can be quite hurtful. Instead acknowledge the pain or sadness the family may be experiencing. 

What to say instead: “I’m here if you want to talk.”

Emotions can be up and down in the same day. Give families space to express their feelings. The NICU is not called an emotional roller coaster for nothing.

Friends and family members in the NICU need your support more than ever, and it’s not uncommon to not know what to say. The most important thing to remember is they just need to know you are there and willing to listen if they need a shoulder to lean on. 

This post is from Hand To Hold. Image: Flickr 

Monday, April 22, 2019

Why people should never expect less of children with disabilities

This guest post is by Tanya Sheckley, a mom who established Up Academy, an elementary lab school in San Mateo, California, focused on inclusion of students with physical disabilities. It was born out of a quest to find the best education for Tanya's three children. There was her oldest, Eliza, whom she describes as "an intuitive and curious child with cerebral palsy"; her middle child,
"fearless and creative"; and her youngest, "observant, sweet and athletic." The school was founded as a legacy for Eliza, who passed away while it was in development. Says Tanya, "We decided she had taught us too much and there were too many other children out there who needed opportunities like this school to stop and that we needed to open it."

Every parent has some trepidation about sending their child off to kindergarten. It’s a new place, new teachers, for some, the first time they’ve been away from home that long. For me, sending my daughter to kindergarten was terrifying.

Eliza was born with cerebral palsy after suffering a stroke in utero. By the time she was five, we had worked with experts in California, Philadelphia, Los Angeles, Canada, Hungary and Austria to work to find the best therapies to help her recover. We knew the brain has plasticity and we knew that every day she got older, tasks got harder to learn. We felt a sense of urgency to find the right mix for her brain to reach its potential.

When it came time to send her to school, she hadn’t been away from us for more than a couple of hours at a time, with someone who was carefully chosen to work with her. She wasn’t walking, or sitting, on her own, she couldn’t talk and didn’t have a communication device to express herself. I was sending my baby to go spend the day with strangers, called school, and I was scared and unsure, but I also knew that she needed to grow and learn.

When you send a “typical” child to school, you register, you provide some paperwork and documentation and you show up on the first day and meet their teachers, give your child a kiss and hope they have fun. When you send a child with disabilities to school, there are meetings, lots of meetings, and assessments, lots of assessments, everyone wants to meet, ask her questions and create opinions about what she can do and is capable of.

In my daughter's case, her motor skills were about those of a four month old. She could reach and grab, but not point and touch. This meant that therapists would expect she would like baby toys, those
cause-and-effect toys meant for four month olds. She did not. She would yell at them, she would give wrong answers and laugh, she would throw the toys on the floor, because she was five, not four months old. But the expectation was, because that’s what she could easily interact with, it must be what she likes.

My daughter, like many kids with disabilities, was cognitively age appropriate. This means that she was of average, or above average intelligence, just like most of the general population. People with physical disabilities are no different than the rest of us, except they have a small injury, usually affecting the basal ganglia of the brain, that affects movement, not intelligence. But that is not our expectation as a society or a school system.

As she was going through all of the assessments for school, I believed it was the work of the experts to make school accessible to her so that she could get the same education as everyone else. I asked for my daughter's aide, who would be hired by the school district, to do some training with our family, to continue the work that Eliza had worked so hard on, so that she could do these things at school. I wanted continuity and continuation, I didn’t want her sitting in a chair all day and not getting a chance to move. They said no, and they gave me this as part of their response:

A student’s IEP must be designed to meet the students unique needs and be reasonably calculated to provide the student with some educational benefit, but that the IDEA does not require school districts to provide special education students with the best education available or to provide instruction or services that maximize a student’s abilities (board of education of the Hendrick Hudson Central School dust V Rowley (1982). A school district must provide “a basic floor of opportunity. . .(consisting) of access to specialized instruction and related services which are individually designed to proved educational benefit to the (child with disability)” (Rowley). The intent of the IDEA is to “open the door of public education” to children with disabilities; it does not “guarantee any particular level of education once inside.” (Id). The IDEA requires neither that a school district provide the best education to a child with a disability, more that it provides and education that maximizes the child’s potential. (Rowley; Gregory K V Longview School dist).

Yes, this clearly states that they will not give my child the best education possible or one that will maximize her potential, but they will allow her to access the education. This meant she could be present, but they didn't have to guarantee an education. I was furious.

Let’s imagine that this was the public school mission for every child. Would this be an acceptable educational standard for our youth? If your answer was “no” and you wouldn’t send your child there, then I ask: “Why is it alright for our children with disabilities?” We should set our expectations higher.

This is what I refer to as the expectations gap. It's similar to the achievement gap, which kids with disabilities also suffer from, but that is generally used to describe lower socio-economic demographics and the struggles with school. The expectations gap happens when you have a child who is intelligent, but has challenges, and so we are conditioned as a society to expect less.

My first experience with this came during the assessment process for her IEP (Individual Education Plan), when she was given baby toys to play with. Our second experience with the expectations gap came in her very first IEP meeting. Before we looked at all of her assessments, they were asking if she should be given until 22 to graduate.

We looked for other options, other inclusion schools where Eliza could be with her peers and get the therapeutics she would need to be successful and independent. We looked for a school that would offer her more than a “basic floor of opportunity” but would actively work to help her reach her potential. But we didn't’ find one. So, in August of that year, we sent her to school. And we started the paperwork to launch our own school.

What happened was nothing short of amazing, depending on your expectations. Eliza was sweet, observant and social. She loved to play and laugh. She was creative with a great sense of humor, and for all these reasons, she made friends quickly. We were fortunate that they offered her an inclusive experience. She started kindergarten in a typical classroom with typical kids and an aide to support her. I was terrified the kids would make fun of her, be mean to her, not like her; but the opposite happened.

When you have a group of kids who don’t have the same conditioning and pre-conceived notions of disability that adults have, kids just see kids. They learned to play together, they learned to communicate, they had fun. She still had bad days, and she still found ways to tell me about them, but she was being a kid.

That didn’t mean she was getting what she needed. At the end of the year, she still didn’t have a way to communicate. Because the school district hadn’t granted my request to train the aide, she didn’t work out and the ended up hiring another one, of my choosing. She was getting limited therapy and being taken out of her regular classes to do it. So now we had a child who already took longer to complete classwork because of her motor challenges and she was getting less time. It was frustrating for her and for me.

Many of the things I was terrified about didn’t take place. Kids can be kind and inclusive if you give them the chance. But I was still facing the battle of the expectations gap.

In our IEP meetings before second grade, I was asked about Eliza's academic goals. We had done the therapeutic goals, but there were no academic goals written. These were never written because her goals were the same as every other kids in her class: get a good education and go on to college or career or whatever she decided. The team asked about putting her on modified grades. In special education language, modified is different than accessible.

Modified grades meant that she wouldn’t get a diploma, she wouldn’t graduate high school—she would get a certificate of completion, which means nothing. At six years old, they wanted to take away her chances for success. Now, this may be appropriate for some children. Graduation isn’t possible for everyone, special needs or not. But, she was in the upper level group for math, she was in the upper level group for reading, she was in the top half of her class in all her academics, and they were suggesting taking away the opportunity for a high school diploma. Because of her disabilities. Because, they as a team of specialists and experts, hadn’t figured out how to accurately help her express herself in her two years of school there.

Let’s go back one more time. Your typical child is in the top half of their class, performing above average academically. What would you say if the school district thought modified grades were a good option? This is not OK for any child.

Often the only person with high expectations for their child is the parent, who advocates relentlessly for support.

The expectations gap runs deep in our school systems and our society. Almost thirty years after the passage of the Americans with Disabilities Act, many public places are still not accessible. The highly publicized Endrew F. V. Douglas County School District (2017) case in the Supreme Court ruled that IDEA requires meaningful benefits, however the meaning of "meaningful" is still left to question. There are changes happening. But until there is a shift in how we train therapists and how we look at disability as a society there won’t be change. Everything we design and build should be created with universal design elements, to be accessible to all.

We need to shift the expectations gap from a gap to an expectation. We know that children often live up to their expectations. If we dare to expect more, we will be incredibly impressed with what children of all abilities can do.

Read more about Up Academy here.

Friday, April 19, 2019

The Disability Blogger Weekend Link-up

What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: He figured out a version of the eye roll. Woo hoo! I think? 

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, April 18, 2019

Give your child a better future on your next bathroom break

I know: Our to-do lists are long. There are never enough hours in the day. We actually need sleep. But there's some big-deal government funding stuff happening that will affect the future of children and adults with disabilities. So here's what you can do: Take the only me-time you can guarantee will happen during the day—bathroom breaks!—and reach out to your reps and voice your concern. Yep, I'm talking potty advocacy. There's even a bot that will basically do it for you, more on that in a bit.

First, what's going on: You've probably read all about the the recent proposed cuts to Medicaid and other programs that would affect people with disabilities including independent living programs, respite care and assistive-technology programs. (Here's a good summary.) In yesterday's New York Times Opinion piece by Tom Ridge, chairman of the National Organization on Disability, he waved a red flag about how the cuts would impact people with disabilities seeking employment, already an uphill battle. The entire Office of Disability Employment Policy is at risk of getting shut down, a federal agency that has been key for paving the work road for people with disabilities.

In more hopeful news, there's a new bill that would, over time, increase funding for educating students with disabilities. It's called the IDEA (Individuals with Disabilities Education Act) Full Funding Act, and it calls for gradual hikes in federal funding for special education. The government would shoulder 40 percent of the costs, beginning in fiscal year 2029. When IDEA was passed in 1975, Congress was supposed to fork up for 40 percent of the costs to make it happen—but in reality, they only pay 14.7% of it.

Rep. Jared Huffman, D-California, introduced the measure. As he said, "Because the federal government has failed to honor its IDEA funding promise, K-12 schools and school districts throughout America have been forced to pay more than their fair share. That means less funding for everything from teacher pay to class size to affording music, art and physical education classes." The bill needs more cosponsors. Here's who's on the list; if you don't see your rep listed, reach out to them.

It genuinely only takes a couple of minutes to contact your rep. One easy way: resistbot. You text "resist" to 50409 on text, Messenger or Twitter and it will quickly find your local reps, let you write a message and zap it to them. It will also put through a call. Here's the one I sent to my reps morning...on a bathroom break.

Hello. I have a child with disabilities whose future is imperiled by the proposed cuts to Medicare and other programs and services for people with disabilities. Please urge President Trump to restore funding. And sign up as a cosponsor for the IDEA Full Funding Act, which will help fund special education.

There. I was done before anyone could bang on the door and ask where their sneakers were or tell me they needed a snack.

Wednesday, April 17, 2019

Peppa Peg debuts a character with a disability

I was reading Ben a book the other night, This Is My Hair by Todd Parr. I totally related to the cover girl who was modeling how hair looks like when you wake up, because it was pretty much how my curly hair looks in the morning.

It's always a thrill to see people like you reflected in books, plays, movie, TV shows, catalogs, commercials, wherever. This is a natural response—it feels good to be acknowledged. Which is one reason why it's important for children with disabilities to see people who look and act like them in media. Another is that they deserve to grow up feeling like they are as much a part of society as any person is. Unfortunately, inclusion is not always the norma, which you well know if you are the parent of a child with disabilities.

All this is why the recent announcement of a new character on the cartoon Peppa Pig generated a lot of buzz—Mandy Mouse, who uses a wheelchair. I don't know much about the show, except that it features cute animal characters who speak in British accents and that for several years, my niece Margo was obsessed with them. 

Announcements like this are a big deal because characters with disabilities are still a rarity—even more so when they're just one of the gang, as Mandy Mouse seems to be, and their disabilities are not the theme of the show (as in, say, the brilliant sitcom Speechless). I can name currentcharacters on one hand: Sesame Street, which celebrated its 50th anniversary this year, introduced a muppet with autism, Julia, just two years ago. DuckTales on Disney just ran an episode featuring Della Duck, an amputee .Last fall an IT entrepreneur with cerebral palsy debuted a superhero with CP.

"I could cry!" said one mom on Twitter in reaction to the new Peppa Pig character. "My daughter loves Peppa and has a neuromuscular disorder. This is a game changer. Thank you!!!!"

"I think it's great they are including a character with a wheelchair on Peppa Pig," says Nicolas Noblitt, a 12-year-old actor who's appeared on Speechless. "It's important to remember there are lots of people in the world with disabilities. Many of them use a wheelchair like me. Inclusion means to not leave people out. It's good a cartoon can teach kids about this."

In an effort to showcase more people with disabilities in film, the Easterseals folks recently ran a weekend-long Disability Film Challenge. Teams made up of filmmakers were encourage to create storylines that acknowledged disability and included at least one person with a physical or cognitive disability. Nicolas appeared in a short film called Party Time by director Alexandria Cree. Watch the film here and share it—the filmmakers still gets points for social shares!—and tag @disabilityfilm challenge.

My niece is really into the new character on Peppa Peg. "Mandy will teach kids that even if she seems different, she is still a kid like they are," she told me.

So, yep, this is progress. And there will be even more progress when more children's media features characters with disabilities. And there will be even more progress when there's not just one character with disabilities on a show but a couple of them. Actually, a few of them. And there will be yet more progress when the day comes that I am no longer sitting here writing about characters with disability in the media because it's not a big deal—it's the norm.

Top image: Twitter/@peppapig 

Tuesday, April 16, 2019

He figured out a version of the eye roll. Woo. Hoo. I think?

"Max, what do you want for dinner tonight?" I ask.

Max looks at me, tilts his head to one side and stays that way until I respond.

"Oh, yes, I should know: steak!" I say, Max's current food obsession (and yeah, spaghetti was a far easier meal habit to support).

Max nods enthusiastically, and I grin.

Max has mastered the eye roll, or his version of it. I am not totally sure why he can't or doesn't roll his eyes; it may have to do with muscle control. I've joked about being grateful to escape this bit of teen 'tude, but the neck roll is part of Max's evolution—adolescence, communication—and it's cool to see.

 Like its obnoxious cousin, the eye roll, the neck roll says it all with a single word:  

"Max, you need to turn off the TV now because you've been watching fire truck videos for an hour!"

[Neck roll = get off my case.]

"Max, do you really need to go to Home Depot again?"

[Neck roll = I can't believe you're even asking that.]

"Max, please put your clothes in the laundry basket."

[Neck roll = chores suck.]

"Hey, Max, where should we go to on our next vacation?"

[Neck roll = California, DUH!]

So far, Max has not given me the neck roll when I talk or laugh when we're in public—my presence doesn't seem to mortify him...yet.

Here's to progress of all kinds.

Monday, April 15, 2019

Dance like you just don't care

Turns out that if you stand outside the theater where the Paw Patrol show is taking place and buy tickets on StubHub about five minutes before it starts, you can get fourth-row seats for an amazing deal, which is what happened to Dave and the boys yesterday. (I got to stay home and spring clean—exciting!) Originally Dave was just going to take Ben, but then Max really wanted to go. Dave's not quite sure which one of them enjoyed it more.

At first, Max was a little meh. Ben, meanwhile, was so awed all he could do was sit there and stare, clutching a pom pom that had been handed out in one hand and his ticket from the train in the other.

By the second act, Max was into it. "I love this show!" he declared. Dave got the boys cotton candy and Ben fed some to Max. Ben remained glue to his seat, occasionally checking in with Dave to make sure the show wasn't yet over. Meanwhile, Max walked over to the stage and danced. A bunch of kids were nearby dancing, too.

Dave told me all this afterward. I wasn't surprised about Max. He does not have much self-consciousness. Sometimes, it's an issue—when Max gets overwhelmed by crowds or din, he's been known to roar (yes, roar), and doesn't care who hears (everyone in the restaurant). But in general, this lack of awareness about what other people think works for him. It means he doesn't notice if people stare. It means he is free to be his own Max self.

I'm glad for this lack of self-consciousness. I do realize that if Max had more of it, it would mean he'd developed advanced awareness—and that would be amazing. But then, he might also notice the way people look at him and the remarks some occasionally make (or the offers to pray for him). But then, wouldn't he'd have more wherewithal to advocate for himself? These are the thoughts that swirl through my head.

For now, he's a boy who's happy to go to Paw Patrol with his little bro and dance away. And it's a good thing.

Friday, April 12, 2019

The Disability Blogger Weekend Link-up: Put 'em up!

What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Busting the myth that autistic people lack empathy

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, April 11, 2019

This is what makes spring even more exciting

All through winter, Max would point to the leafless trees and say "Ewwww!" What he meant: Living in a cold climate was not for him. California, however, was. And so, when spring finally rolled around and the trees started budding, Max got genuinely excited.

Max isn't the only person in the house thrilled by the arrival of leaves. At 3 years old, Ben is full of awe, even for things that don't involve iPhones. When we walking around last weekend, I pointed to shrubs that were starting to turn green and said "Look, the leaves are growing in!" and he let out this adorable giggle, the one reserved for stuff that truly delights him.

The other day, Max and I headed out to pick up Ben from daycare. We were at a stoplight when Max's face lit up and he squealed. There was a big tree in a park with little green leaves. As we drove past it, I spotted a sign that said Optimist's Park and suddenly I felt like I was in some sort of Disney movie and bluebirds were about to pop up and start circling around my head.

I get just as happy-giddy about the season. Coming home from work at night and seeing which flowers are cropping up on people's lawns is a treat. In the morning, right after I wake up I look outside to see which daffodils have bloomed in our backyard. But it is extra-awesome to see the season through the eyes of my boys, one who's got a tremendous sense of wonder and one who, at age 16, has never lost it.

The cherry blossoms came out this week and as Max, Ben and I drove home that afternoon,  we played a game of spotting which house had trees with pink blossoms and which had ones with green leaves. Nothing complicated. But we laughed and laughed, and loved spring and life.

Image: Flicker/SMcD22

Wednesday, April 10, 2019

Busting the myth that autistic people lack empathy: the community speaks out

For decades, the prevailing stereotype was that autism spectrum disorders manifested as a lack or deficit of empathy. More recently, however, research suggests it’s precisely the opposite, that we may in fact experience higher levels of empathy. This updated understanding of autism was emerging before I met my wife, Raychel, but it took her becoming the most important person in my life for me to really understand it. I almost literally can’t stand to see her in distress or discomfort; even when it’s a problem that has nothing to do with me or is out of my control, I feel it so deeply that I’m driven to distraction trying to solve her problem.

Yesterday, I read those words in a USA Today Opinion column by journalist Zack Budryk about how being on the spectrum has made him a better spouse. The myth that people with autism lack empathy is a deep-rooted one in our culture. When I asked parents and autistic adults about it on social media, I got an outpouring of responses. I'm sharing a bunch of them here, in the hopes of busting a longtime myth during Autism Acceptance Month.

"I can tell my 10-year-old son has empathy because I constantly wear my feelings on my face and he's usually trying to look at me and figure out what's wrong and asking me if I'm OK."—Kristy

"Adi is literally the most empathetic person I know. When we were on the way to the hospital because we had just been told that he had leukemia, he kept asking me why I was sad. He and my mom were both in treatment at the same time. Even now, he regularly tells her 'Nice hair' with a meaningful glance. He can tell immediately when I'm sad or angry. Always. Well before my husband, who is theoretically NT."—Abbi

"When my son hears or sees someone in distress he is very concerned about what is going on. I usually try to summarize what he sees, and reassure him it will be okay. I think when he was younger, he felt the same, but his reaction was different. He was fearful of how, why, and is it going to happen to him. He may have even bolted to an area he considered safe, fight or flight triggered. Now we stay put if it's not too distressing, and he remains concerned until the person is no longer in sight."—Elsa

"I would actually say as a I kid was overwhelmed by empathy. I collected pen caps because I was afraid they'd be unappreciated and lonely without their pens. I walked three flights down with each individual ant that made it into our apartment because I didn't want its best friend to lose it.... I cried real, heart-wrenching tears for the great great grandmother who had moved her family in an act of desperation to Canada, only to have 90 percent o her children die in the 1890s.... I think that because the objects of empathy—the outlets—can be different (and to some, seemingly random or disconnected) for autistic kids, just as the sensory experience of joy can be different, the emotion and capacity that is empathy gets invalidated. Folks presume that because we don't have the 'right' focus in our empathy that we must not 'get' it. But we do. We just might not express it visibly in real time, because so much of our experiencing the world is fragmented and fractious and reassembled later on own time when no one is looking, and the feeling of being watched/'seen'/vulnerable is so heightened and intense."—Kelcey

"My son knew I was sad when my mom passed. He hugged and kissed me on my eyes. He saw me crying. He was so sweet."—Nona

"Both of my sons show empathy. In fact, they can almost feel my emotions more than I do, so when I'm upset, they may cry with me, or lay their heads on my shoulders. My seventh grader will give me a little forehead rub because he knows I'm stressed out. They don't lack empathy. If anything, in our versions of autism they feel others' feelings so much and are unsure about how to proceed because they feel the discomfort or the extreme excitement, which is then difficult for them to regulate."—Lisa

"Lack of empathy may be the biggest falsehood/generalization there is about people with autism. My son is the most empathetic person I have ever known. He truly feels for others, especially those he cares about. If his neurotypical brother is hurt or upset, he's the one who cries or reacts."—Cassandra

"We had to leave the other day, and I just couldn't get my kiddo out the door. Overwhelmed—I hadn't eaten and it's a super stressful time of year—I began to cry, which I rarely do in front of anyone. He instantly perked up and started putting his things in his bag. We were out the door in two minutes. I also have a good friend who is an adult on the spectrum. He is one of my go-to people that I message when my anxiety is getting the better of me, because he gets it, and shows the most empathy with my feelings of all my friends."—Anna Mary

"I'm autistic. My sons are autistic. We have all been clinically diagnosed as such. You can ask anyone who knows us whether or not we are empathetic people. I have a feeling they will say yes. My older son not only advocates for himself in school, he advocates for his classmates as well. His teacher tells me he is always making sure they get help when they need it.... My younger son volunteers to teach 3-to-5-year-olds karate, getting up at 8:00 every single Saturday to do it. He is genuinely kind to them and the little kids love him. I volunteer for many community action and disability groups. Even if I do it awkwardly, I try to comfort people who are in pain because I know what pain feels like and I don't want to see people suffer. Are we in our own heads a lot? Yes. Are we sometimes oblivious to social cues? Yes. Are we empathetic? Yes. It just looks different sometimes."—Nadine

"My kiddo is super empathetic. He really gets upset if someone he cares about is sad or hurt. He is always checking in to see how I am feeling and offering hugs or snuggles. He cries at sad animal movies and loves animals and can read them really well. He is definitely not the movie version of an unfeeling 'autism robot!'"—Tia

"Both of my sons are very empathetic, but don't always show it as expected and can't express it as well as they'd like to, and yet are also incredibly self-aware that this is the case. My 16-year-old actually sent me a text not too long ago that said, 'Mom, I've been reading about cognitive vs. affective empathy*, because I'm experiencing the latter a lot, and the more I read about it, the more I wish I could be better at the former and worse with the latter.' He included citations in case I wasn't clear as to the differences!"—Amanda
* Cognitive empathy is the conscious drive to recognize and understand someone else's emotions; affective empathy is the kind that happens instinctively.

"About a month ago, I wasn't feeling well. In fact, it was the worst illness I have had in a long time. Husband and neurotypical daughter left the house early and didn't know I was sick. My little guy, age 11, noticed right away and brought me a blanket and a glass of water. He rubbed my shoulders and offered to make me breakfast. After he made me peanut-butter toast, he sat with me holding my hand. Then he asked what movie I wanted to watch, from a kid who fights tooth and nail for his own choice most of the time. Phillip is very affectionate and shows his love freely."—Beth

"I've always felt that my son feels things more strongly than most people, but lacks the tools to express it. He's incredibly tuned in to other people's emotions and moods. And gets very anxious if anyone is upset."—Tara

"I'm on the high-functioning end of the spectrum and I have empathy. When i see people hurt/sad, it makes me feel hurt/sad. Each person with autism is different."—Tyler

"I have two boys on the spectrum, ages 10 and 11. They have more empathy than many adults I know. My 10-year-old will cry at movies and books he reads. He goes out of his way to befriend the kids who aren't included because he knows how it feels. My 11-year-old will take the brunt of a situation to prevent his brother from being hurt. He will be the first to tell me when a child is sad because he can see it on their face. Even their therapists have said that they have such a huge empathy piece."—Tracy

"My oldest is on the spectrum and he is very empathetic. He is so tender hearted and he absolutely gets it from both his dad and  from me. While he struggles socially, empathy for others has never been a problem. It's others having it for him that's more of an issue."—Andrea

And so, as is inevitably true, stereotypes are just that—an oversimplification. A generalization. A gross misunderstanding of an entire population.

As has often been said: If you know one person with autism, you know one person with autism.

Enough with the stereotypes. Here's to the glorious spectrum of people with autism.

Tuesday, April 9, 2019

What this cut-up pizza says about raising a child with disabilities

Max and I were out the other day and ordered a couple of slices of pizza. I asked the guy behind the counter to cut them into bite-size pieces. Max speared the bits adeptly and shoveled them into his mouth, hungry teen boy that he is.

This is what Dave and I often do when we eat out: We ask to have food prepared so Max can eat it on his own. I could cut up the the pizza myself, of course, but the pizza guy has a pizza cutter and he can quickly do it. It makes my life every so slightly easier, so I ask.

That is what I've learned to do over the years: to ask for what Max needs, and for what I need, too. I need you to call me, office receptionist, if the pediatrician is running really late so Max is not sitting around for 45 minutes getting restless (or me, either). I need you to email me weekly, school therapists, to tell me what you're working on with Max so I can do it at home. I need you to put our family in a quiet area, restaurant hostess, so Max won't get upset by the din and maybe we can all enjoy a calm-ish meal. I need you to make my son some rolls, sushi chef, with no seaweed because he can't chew that. I need you to let me know, big-deal specialist doctor, if you have any cancellations because we can't wait five months to see you and OK, I'll just call back tomorrow to check in.

Years ago, I revealed here that I asked restaurants to cut up spaghetti for Max, who isn't able to eat the long strands. (This was in the throes of his spaghetti obsession.) Chefs have super-sharp knives, and it's simple enough for them to do. Some people did not take kindly to that; one called me "entitled." And so, I wrote The Spaghetti Manifesto, declaring my right to find ways to make life work for Max and me, too. That's still the way I roll. Someday, soon, I hope Max will make the asks.

As parents, we juggle a whole lot with all our children—each one has their own needs. Even if we were fiercely independent before we had kids, even if we do more in a day than we ever dreamed possible (OMG WHAT DID WE DO WITH ALL THAT FREE TIME BEFORE WE HAD KIDS?!), we learn to ask others for help. Small requests, big requests, all the requests. 

Pushy? Nope. Just ultimate problem-solvers and road pavers. And we wouldn't have to be if only the world were more accommodating.

Power on, parents.

Monday, April 8, 2019

One way to reduce hospital anxiety: drive into the operating room

Why get wheeled into an operating room when you can drive yourself in? That's exactly what's happening at Doctors Medical Center in Modesto, CA, where patients ages 2 to 7 have their choice of a mini black Mercedes or a new pink Volkswagen Beetle.

The cars, which can be operated by remote control or by kids, have a stereo and MP3 player, working headlights, backup lights and dash lights, a horn and of course, a seat belt. There are doors, though the cars lack keyless entries, heated seats and navigation systems. But, hey.

The idea came from pre-op nurse Kimberly Martinez, RN, who did some research and found the little cars can reduce stress and make surgery less anxiety-ridden (er, so to speak) for all involved. "When the children find out they can go into the operating room in a cool little car, they light up and in most cases their fears melt away," said Martinez. "It can be traumatizing for a young patient to be peeled away from their parents as they head into surgery. This helps both the patient and their parents."

Pretty genius. Getting wheeled into an emergency room is terrifying at every age. The cars are fun and put kids in control, a feeling that is utterly lacking when you are lying on a stretcher and hopsital staffers are rolling you into the operating room. These kids are literally steering their situation.

No word yet on whether kiddie patients have started offering hospital Uber rides.

Image: Doctors Medical Center Newsroom

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