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Just one of the best videos ever

Seven years ago, Max got an adaptive bike in purple, his favorite color at the time. And just like that, Max started riding a bike around our neighborhood. He pedaled with extreme glee. He got really fast. Other kids were all, "Wow, that is a cool bike!"

Max hasn't used the bike for a couple of years now. I was at work the other day when our sitter zapped me this video, and I almost cried. Ben is learning to ride a bike. And you know who's helping him? 

Yes. 

 

An autistic and blind singer wows America's Got Talent, and one very important person, too

At 8:45 last night, we woke up Max and Ben and headed to the basement with Sabrina because of a tornado warning for our area. We skipped the dire weather reports and caught the end of America's Got Talent. It turned out to be one very memorable show.

A guy with a cane walked onto the stage, accompanied by a woman. He introduced himself, Kodi Lee. He said that he was 22 years old and he was going to sing a song on the piano. The woman, his mom, noted that he was blind and autistic, that he'd responded to music since early in his life and that music had been healing.

Then Kodi sat down at the piano and blew everyone away with his rendition of "A Song For You" by Leon Russell.

The judges gave Kodi a standing ovation. Simon praised the beautiful tone of his voice. Howie Mandel called him "a great inspiration." Kodi got the golden buzzer from Gabrielle Union, guaranteeing him a place in the semi-finals. Backstage, she proclaimed, "You just changed the world."

Kodi certainly was all sorts of incredible. But it is demeaning when people consider ones with disabilities "inspiring" or amazing for being themselves, as came up recently when a young woman with CP made headlines for graduating college. You never hear a judge on any of these talent shows say that someone is "inspiring" unless they've made it through some really unfortunate circumstances, like being homeless or having a serious illness.

But people with disabilities aren't unfortunate or tragic or any of that. They've got abilities and aspirations and talent—just as the 2018 winner of Britain's Got Talent, comedian Lee Ridley, showed (he has cerebral palsy). I sure hope that Kodi is enabling a gazillion more people to see that you can be disabled and be a star. I was especially excited to watch Kodi make an impact on one particular person: my boy Max.

Max watched Kodi Lee perform in total awe, speaking up only to mention that he resembled a school friend. When he was done, Max asked if he could go to the theater and hear Kodi sing. "He's very good!" he said, his eyes shining in the dark. I hope it was the same for other kids and teens with disabilities.

Max's relationship with disability continues to develop. "He doesn't care that he has a disability—he just does his thing," one of this teachers mentioned recently. Although Max is well aware that having cerebral palsy can make certain things challenging, especially when it comes to using his hands, he doesn't think of himself as different from other people. Which is THE most amazing thing, and exactly how I'd like people to perceive him although that doesn't always happen; he remains the recipient of pity stares and the occasional "awww" when I say that he has CP. Society still has a long way to go in terms of not just accepting but understanding that people with disabilities are, well, people.

Facebook post by The Arc Greater Mid Cities

This is all the more reason why I want Max to be inspired by adults with disabilities. I'd like for them to show him the possibilities that lie ahead, and help him perceive that people with disabilities contribute as much to this world as any person does. And now, he has a new role model.

Last night, as it stormed outside our house, Max basked in the glowing performance of a gifted singer and pianist with disabilities. And it was awesome.

Yes, I'll happily drive around so you can wave a flag out the car window

Max discovered a new favorite pastime over the holiday weekend and it is called: I drive him around as he holds a flag out the car window.

It started when he decided that he wanted to walk in a Memorial Day Parade. Last year, he marched in our town's parade. This year, we were down at the Jersey Shore and he kept talking about it. On Sunday, Sabrina and Ben hit the pool but Max wasn't into it. He'd generally rather drive around, go on a Monster Truck ride, eat ice-cream, check out the kite show and eat more ice-cream. He's not much into the beach.

We've been visiting Wildwood, NJ, since Max and Sabrina were little. Back then, Max's hobbies included wheeling a luggage cart around the cavernous garage and sliding the shower door open and closed. It was hard to keep him otherwise entertained because when he fixated on doing something, he only wanted to do that. Dave and I would take turns trotting around the garage with the luggage cart and trying to detract Max from the shower door. Max's interests have expanded but there are times when he still gets really into doing just one thing, as happened with the flag.

I stopped at Bed, Bath and Beyond, where spotted a small flag and we bought it. After, I ducked into Marshall's and he stood outside, waving it in the breeze. Then we visited a local fire station where he met Firefighter Jim, aka Meatball, who said he'd be driving a truck in the local parade the next day. Max was angling for a ride, but decided he'd find a way to walk in it. We agreed that would be a good way to honor the people who'd fought for our country.

As I drove back to our place, Max opened his window and stuck the flag out. He really enjoyed the feel of it fluttering in the wind. Just as I was about to turn in to the driveway, he asked to drive some more. So we cruised around for another half hour. On Monday, Max grabbed the flag and we went out for breakfast. As the rest of us were finishing up, he headed outside, stood by the curb and held it up. Cars honked at him, which Max thought was awesome.

And then. the parade. Dave and Max ambled off and next thing I knew—after the band and Girl Scouts and Cub Scouts and fire trucks passed by and I'd waved at Firefighter Meatball—there was Max walking by, happily waving his flag.

Later, we headed out to miniature golf but Max wasn't into it so I took him to get ice-cream. His flag stick snapped in half in the shop's door and I replaced it with a larger one from the nearby five-and-dime, which seriously excited him. He kind of looked like a tour guide as he walked down streets, flag held aloft. (Also: I'm always happy anytime he raises an arm up high—way to flex it!) He stopped by another fire station to say hi, toting the flag, and they were impressed by his patriotism.

Max got to stay at the beach an extra day because he has a bonus day off school today, thanks to an unused snow day. Dave is with him and I have a feeling they will be doing some flag driving. We're cool with that. You do what makes your kid happy. Max has no self-consciousness whatsoever about walking down streets, waving his flag. Wouldn't it be great if we all felt so comfortable letting our flags fly.

In the scheme of stuff Max has been into, including car washes and Lightning McQueen merchandise, we're getting off cheaply (well, aside from his current steak obsession and the fact that he wants to move to California). This is also relatively easy: get into a car, open the windows, drive. I'm just hoping the thrill wears off before winter arrives.

The Disability Blogger Weekend Link-up, long weekend edition

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The photos that could help change perceptions of kids with disabilities

Over the years, when I've searched for stock photos of children with disabilities to use on the blog to depict ideas (I mean, it can't be all Max, all the time),  there haven't been many to choose from. There are a number of web companies that offer stock images—photos typically taken by pros that anyone can purchase for a fee—but the ones of children with disabilities are often stereotypical or outdated. I've seen children in clunky old wheelchairs, children sitting in wheelchairs looking alone and helpless and those ubiquitous autism puzzle pieces. There have not been enough photos of children or adults with disabilities living their lives—in school, at work, at home with friends or out and about and enjoying themselves.

This deficit of photos means that websites, newspapers and magazines lack options; it's one reason why people with disabilities are featured in less than 2 percent of the images we see in media. Yet that may be changing thanks to The Disability Collection, a joint venture created by Getty Images, Verizon Media and the National Disability Leadership Alliance I recently found out about. It's a collection of stock images that aims to, as Verizon puts it, "break stereotypes and authentically portray people with disabilities in everyday life." They hope to encourage the media industry to get "real" about disability representation.

There's a pretty good mix of photos in the collection. I'd like to see pics of children or teens with orthotics, as Max has, and children with autism doing their thing. While this does raise the question of exploitation and the images of children with disabilities being used for financial gain, the truth is parents of kids of all kinds do this. That's not an excuse, but it could be argued that they are doing good in this world by raising awareness. I'd hope that they are asking their children's permission, age appropriately.

I also hope that the day will soon come when a dedicated collection of images of children and adults with disabilities will no longer be necessary—they'll be integrated with the usual mix of stock photos. So that when a photo editor goes to search for, say, "cute child riding bicycle," a girl with Down syndrome or one with limb differences will crop up and they'll choose one of them. Organic inclusion: It's what we want in every part of life.

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When news stories celebrating people with disabilities do them wrong

"'People with disabilities can do phenomenal things': JSU student with cerebral palsy graduates Summa Cum Laude," the headline proclaimed. And a whole lot of people in Jackson, Mississippi would have read that or seen the corresponding news report on WLBT news and thought, WOW, AMAZING, YOU CAN HAVE CP—POOR THING—AND STILL DO OK FOR YOURSELF!

They were getting the wrong message, starting with the fact that this story made news at all. I'm thinking about this because Cara Liebowitz, Developmental Coordinator at the National Council on Independent Living, recently posted about it on Facebook. "I graduated from college summa cum laude, too," wrote Cara, who has CP. "Did you see any inspirational headlines about me? No! Because it's literally not news! I'm happy for this young woman, but this is a personal accomplishment. It's not newsworthy just because she has CP!"

Exactly. This young woman is accomplished—but she shouldn't be deemed more so by a news station for having graduated with cerebral palsy. It's the phenomenon that's known as inspiration porn, and it's perpetuated by social media. While I appreciated this woman's can-do message, given the fact that she had been bullied, in the end this sort of article doesn't do her or people with CP any favors.

My thinking on this has evolved over the years, especially as I've connected with adults in the disability community. When the media makes a big to-do about people with disabilities and typical achievements, it unintentionally tells a different story that says people with disabilities actually aren't that capable, and so let's make a big deal of it when we happen to hear of someone succeeding. It's a vicious cycle that perpetuates negative stereotypes of PWD.

Obviously, this woman should be proud of herself, as should her family. In our own family and on this blog, I chronicle Max's achievements, big and small. I'm his coach, his cheerleader, his champion—it's what we moms do. I hope to encourage other moms who need more hope. At the same time, I also try to spread a message that isn't always apparent to others: cerebral palsy is a condition, not a tragedy. People with cerebral palsy have abilities, same as any people on this planet. They go to school, graduate college, date, marry, have babies. Or they do their own thing. You know: humans.

To be sure, CP comes with challenges, especially because of a lack of accommodations. Colleges, for one, have a long way to go in terms of being inclusive. Still: perception matters. There are so many stereotypes about people with disabilities that create obstacles for them—socially, in the job market and basically in every part of life. And all of us should be aware of not perpetuating them.

What I desperately want for Max is for people to assume competence, capability and potential. Please, consider that before you share an article about a person with disabilities doing something seemingly amazing when, really, they are just living their lives.

When time passes so slowly, and then it speeds by

I was on a call yesterday with the director of the camp program Max attends every summer. I couldn't believe we were, once again, discussing Max and his needs. Had a year really passed? Yep, but it sure didn't feel that way. This is the very opposite of how time felt when Max was a tot. Life seemed to go by in slow-mo. Every day that passed was another day when Max wasn't making progress, and another day filled with anxiety.

When your child with disabilities is young, it is hard to believe there ever will come a day when you won't be constantly worried sick about his future. But the years go by and you grow to accept your child for who he is. You never stop hoping for the progress, of course, yet you do stop watching your child's every little move. You accept that your child will do what he can do, on his own time—and that he's a pretty awesome child any which way. 

So there I was on the phone with Orlee.

Was Max still into the fireman thing?

Yes, but he's no longer wearing his red Fireman Max firefighter hat. He even lets Ben put it on at times. Gasp! Although who knows, last year he wasn't wearing it much but when he went to camp, on it went. 

Does Max still want to move to Orlando?

Oh, that was so 2018. As of now, Max is intent on moving to Los Angeles. Dave was there on business the other week and Max kept texting him every fifteen minutes to bring home a t-shirt. When Ben is acting up and Max tries to discipline him, he tells him, "You're not moving to California with me, Benjamin!"

Speaking of texts: I told Orlee that Max now has an Apple watch, and it didn't seem like a good thing to bring to camp or he'll be texting us all the time. This has actually been one of the more remarkable bits of progress this past year. At first, Max was typing texts. Then he'd try to give the watch speech commands, but it couldn't discern what he was saying. So now, Max draws letters to make up words.

Does Max still like mac 'n cheese?

Yes, but he is on a steak kick. Not that we are expecting the camp to serve him steak—that would be a first! He will just have to suffer without his sirloin for several weeks. 

Max insists we keep all the steak sauce on display. We might need to send a bottle with him.

The main goal I had in mind for Max for summer camp, besides having a ton of fun, is to continue to grow his independence. He is a boy who needs a helping hand, but at home it is sometimes an uphill battle because he is so used to having us do stuff for him. He'll have new counselors this summer, and so they can challenge him to wash himself in the shower or put a marshmallow on a stick by himself.

Another year that's sped by. Another year of growth and progress. Another year of my ever-morphing Max, an amazing teen I could have never imagined back when he was young.

A viral story that shows accessibility is not the same as acceptance

I recently read a viral Twitter thread by Toronto writer Erynn Brook. Going home late from work, she encountered a woman on the train who had a seizure disorder. As I read the story of what happened that night, I thought about Max being on his own as an adult, especially when I got to her last few lines.

This, right here: "It's a story about human needs, through the lens of disability, and how accessibility is not the same as acceptance or community care." 

Yes.

As the mother of a child with disabilities, I have often advocated for the accessibility Max needs and demanded the respect he deserves. We are lucky to have Team Max—the family, caregivers, therapists and teachers who are there to lend him a hand and enable him to do things on his own. But someday, when Max is an adult, I am hoping he will be able to do things independently. At the same time, that wish absolutely terrifies me as it means he could well be in situations where he may need assitance from strangers. 

Of course, we will make sure Max can communicate his needs and that he has a seizure plan handy. The woman on the train had a laminated sheet of paper with her seizure plan. Max has his speech app (and whatever technological advancements may arrive in the coming years). But will people know how to respond if, say, Max needs help manipulating a door knob? Or tearing off a wrapper off of food or doing any number of everyday things that involve fine motor skills?  

I can only hope he will meet up with people like this woman who care, who accept and who understand. But hoping just won't be enough for his reality.

The Disability Blogger Weekend Link-up awaits you

 What to do if you're new  

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Hashtag neurotic parent

Several years ago, when we realized Ben had a suspicious lump on his neck, it became clear just how neurotic I could be as a parent. Given the trauma Max went through at birth, it was amazing that I generally wasn't all that freaked out about health stuff throughout Max and Sabrina's childhoods. I stayed calm. I didn't fear the worst, other than the devil that is seizures. Perhaps it was because we'd been through a certain hell when Max was born, and everything that followed paled in comparison, although I can totally understand why some parents would have the opposite reaction.

The years went by and we had another little guy. And now it's become very clear that nothing is holding me me back from letting my freakout flag fly.

Ben got a fever on Friday. On Saturday it was 103. The pediatrician said it was a virus; he tested negative for strep. He seemed to get better. Then on Monday he got sent home from school because he wanted to nap. He mentioned that his head hurt. Then he mentioned his neck hurt. Then he said his teeth hurt, pointing to the back of his mouth. Then he was burning up again and lying on the couch, whimpering so sadly. The most alarming sign of all: He didn't even want a lollipop, his favorite food group.

I should know better to consult Dr. Google but: #neuroticparent. As soon as I did, I booked another appointment with the pediatrician, this time with one of the most experienced doctors in the practice. I told her all his symptoms. She examined him then rationally pointed out that when little kids say their neck or teeth are hurting, they often mean their throat. It wasn't red but it could have been bothering him.

"When can I get stickers?" Ben asked.

"Can I ask you a neurotic question?" I said, and the student P.A. trailing the doctor smirked. "There's no chance it's meningitis, right?"

The doctor looked at me kindly and said "If he had that, trust me, he wouldn't look so good and he certainly wouldn't be asking for stickers." In her decades and decades of experience, she'd only twice ever encountered meningitis.

"He's had his shots, right?" the P.A. piped up.

Yes, he had.

I calmed down. But in the days that followed, Ben's fever stuck around. At one point when I asked what was wrong he explained, "There is a doodie in my teeth that has to go down to my feet," and no amount of googling was going to explain that. Dave was on a business trip so there was nobody around to calm me down. I hit my Facebook mom's group. Some noted their kids had the same virus. But: Could it be coxsackie? Could it be mono? I texted my two best friends, who wondered if he had the flu. Dr. Google said: Eeeeeep weird bacterial infection! Yikes what if it's some rare problem? OMG COULD IT BE THAT?! Technology is your BFF and your best fear enabler, too.

Then my mom gut took over. Ben wasn't totally his usual self, but he was feisty and smiley. That gut has served me well. Like the time Max was on antibiotics for strep throat yet still didn't seem to be quite right. We went back to the doctor. She said it was a viral infection on top of the strep. A couple more days went by and I knew something was wrong. We returned to see a different doctor and sure enough, he still had strep. Another form of antibiotics cured him.

As of today, the fever's gone and Ben's in good spirits. Me, I'm seriously relieved and drained. Parenting: not for the weak.

How kids can talk with children who are nonverbal

This guest post is by Victoria Nelson, author of Hiya Moriah. It’s an illustrated, rhyming book she wrote to honor her daughter, Moriah, who passed away five years ago from a rare medical syndrome called CHARGE. Hiya Moriah helps children better understand medical gear that may seem intimidating, as well as kids who may seem very different. With its amazing message of acceptance, it deserves to be on every child's bookshelf. “One primary reason I wrote this book was because we were often met with stares and questions of ‘What’s wrong with her?’ which made us feel like we never quite belonged,” says Victoria. “I believe knowledge is power, and by teaching children about medical equipment and challenges, it can help break down social barriers and uncertainty.” Here she shares five tips to help children interact with ones who are nonverbal.

It has been over a month since Hiya Moriah was released, and I’m overwhelmed by the sweet response it has received. I’ve been brought to tears seeing pictures on Instagram and Facebook from people all over the world holding the book. It feels like a piece of my heart is with everyone who reads it, and that it’s making a difference. I’ll never forget how, during one of my first book readings, when I got to the part where Moriah explains her G-tube, a little boy jumped up, lifted his shirt and shouted excitedly, “I have one too! I have that too! Look! See?!?!”

Now that many have read the book, I want to further address what happens if someone goes up to say “hiya” to a child with disabilities, and he or she doesn’t respond. On many occasions, when kids would finally come over to meet Moriah, she’d get excited and “dance” in her wheelchair, making a few sounds. But when Moriah didn’t say “hi” back because she didn’t talk, I could tell they weren’t sure of what to do next...and they would usually walk away. I really appreciated the effort, and don’t fault them at all for not knowing. I’m here to encourage continued efforts and interaction with a child who is nonverbal and who communicates in ways other than words—maybe through sign language, hand/eye gestures or communication devices. Moriah often spoke with her laughter.

These are five key ways to interact with children who are nonverbal—I’m calling them the 5P’s.

Position to see
It’s always best to come in front of someone who is in a wheelchair and look at them straight on rather than from the side or behind so you are physically saying “I see you.” If you are able, bend down to be at eye level. While doing this, respect personal boundaries: Avoid leaning on a child’s wheelchair or touching their hands because some children could have compromised immune systems, which was our case with Moriah. If eye contact is not returned, please do not take it personally because some children cannot or do not want to make eye contact, yet they still want to be seen and known.

Posture kindness 
I believe children and their parents can pick up on body language and energy, and can tell when you’re coming from a sincere place. Moriah could definitely sense it. She reciprocated smiles if you gave one to her. Smiling at a child can go a long way for a parent, too—it shows you’re there for their child in a supportive, non-threatening way.

Politely ask questions   
If you’ve said “hiya” but do not get a verbal response from a child, I believe it’s okay to ask a child’s parent or caregiver questions. You can include the child by first saying, "I'm going to ask your mom/dad a question." It might be because I’m half English and I spent my childhood summers in England, but I’m completely taken with “May I.” It just sounds extra polite. For example: “May I ask his/her name?” or “May I ask what this is?” (regarding any medical equipment). It’s also OK to ask about other things such as: “How does _____ like to communicate?” and “What does _____ like to do for fun?” and “What is _____’s favorite game?”

I absolutely loved when people asked these thoughtful questions with Moriah. It showed that they were taking interest in order to interact with Moriah in a respectful way. Just keep in mind that someone who has a disability also has boundaries like any other person, and it doesn’t mean one has the right to know their whole life story upon meeting them—not unless it’s offered. There is a fine line between asking with a genuine interest to become informed and learning how to communicate with someone and asking offensive questions like “What’s wrong with her?” and “How long is she expected to live?” These are just insensitive, and most parents I know don’t want to explain what’s wrong with their kid or forecast their child dying.

Let’s try to change the way we ask our questions and instead of asking “What’s wrong?” say what’s right, such as “I like your smile” or “Wow! Your watch is awesome.” Let’s first affirm the positives, and eventually, it can lead to questions of  “What are these cool, different things that you have?” in order to better connect and become informed.

Patience is key 
Communicating with someone who is nonverbal can’t be rushed. Taking a bit of time to wait, pay attention and listen in a new way can help you get to know the person, and understand what they might be trying to tell you. There were many afternoons of reading books to Moriah, and I never really knew if she was enjoying them. But one day, Moriah became focused on a particular story in her Children’s Bible, and every time I’d try to turn the page, she’d turn back to “Jesus Heals a Blind Man.” From that day on, she would grab the book, stick it in my face and have me read the story over and over again. She was showing me what she liked. It was in these little moments with Moriah where I got to learn about my sweet girl, and what she liked and what her personality was—without ever using words. I learned to wait on her to let me know what she wanted to communicate, and it forced me to slow down and pay attention like never before.

Presence and persistence, not perfection 
One of the best things I ever read to help me when making new friends was in Missing Stars, Fallen Sparrows written by my dear friend, Nick Palermo, founder, creator and the heart of Young Life Capernaum, a ministry for high schoolers with disabilities. In his book, Nick mentions “being comfortable with being uncomfortable.” My mind was blown after reading this phrase, and I’ve held onto it ever since. It's given me permission to get over my fear of being awkward anytime I was meeting someone who was different than me. This gave me the freedom to just try, even though there might be uncomfortable pauses and fumbling of words. My goal is to be intentional, present and persistent. The reward has been much greater when I faced my fear of being uncomfortable and awkward; the beauty and friendships that have surfaced from persistency has been invaluable.

In the end, because each of our children is so different and unique, there is no one formula for how to interact. I believe the key is to be intentional and mindful of creating spaces for all children with different abilities, especially those who communicate differently. I encourage you to forge your own experiences by reaching out to include others. Together we can start reconciling the social stigmas and barriers that exist in society about people with disabilities with creating awareness—and friendships, too.

You can connect with Victoria at Moments With Moriah on Facebook and @victorianelson on Instagram.

You never stop appreciating your child's wins

This year's Mother's Day cards from the kids were priceless—it's the way I feel every Mother's Day. Sixteen years into this motherhood thing and I still feel so grateful for their handmade goodies. Their cards will be sitting on our kitchen countertop for weeks to come.

Ben's card from preschool noted that his favorite thing about me is "I like to talk with her." Dave scribbled notes of appreciation on his card from the kids. Ben's said "I love her and I like to play with her!" and Max noted "I love her but I hate where we live and why did you move here?" cause he is hell bent on moving to California. Sabrina's tribute had all the good words: strong, kind, gentle, thoughtful and cool. I couldn't believe I rated a "cool." 

I had one of those it's-amazing-how-far-he's-come moments with Max's card. The handwriting was really clear—such a win for him. In the past few months, he's been intent on working on it. As I looked at it I thought back to the early days when he wasn't able to grasp a spoon or crayon, let alone a pencil. Max's accomplishments often have major history behind them. When I'm looking at a card he's made, I'm not just looking at the card but the years of hard work that went into it, which makes it all the more wondrous.

It's often the same with everyday stuff. The other evening, Max was going up the stairs. He likes to bend over and use his hands to climb, because he feels more stable that way although it's not working for him so well anymore. All of a sudden he said, "I'm stuck!" and I dashed over from the living room. His arms were too close together and he didn't feel secure moving. I told him to separate them for more support, and he did and continued on his way up. 

As I came downstairs, I remembered how the physical therapist used to help Max up. I thought about all those years of carrying him and then holding his hand. I remembered that time we were on vacation nearly seven years ago and he went up the stairs by himself for the very first time. 

This is why climbing stairs isn't just about Max being able to do it—it's the sum of many years of effort, determination and hope. Same goes for eating with utensils, throwing a ball, reading, using his iPad, speaking words and so many other things. And it is why this boy's Mother's Day card isn't just a Mother's Day card: It is sixteen years of awesome, on a piece of construction paper.

I'm getting a Mothers's Day do-over

The plan: celebrate Mother's Day on Saturday, cause Dave had to leave for a business trip on Sunday morning and there wouldn't be much relaxation without him around, which is all I ever want for Mother's Day, including sleeping late and a pedi and nobody banging on the bathroom door when I'm showering to ask for a snack. He booked dinner at the gastropub we go to every eyar. For some reason, I got the feeling things weren't going to go as planned. I had no idea.

Ben emerged from preschool on Friday, a present in his hand. "I'm giving it to Daddy!" he announced. I explained what Mother's Day was. He pondered it. "When is Kid's Day?" he asked. "Every day!" I responded. I decided, generously, that if he wanted to give my present to Dave he could although there was a chance I'd require therapy for that.

Saturday started off nicely. I slept till 9:20 a.m., because I've lost my talent for sleeping really late. There were cards on the table to greet me and flowers showed up soon after.

Ben had the sniffles and seemed to be a little out of sorts. In November, he'd had surgery for a benign cyst on the side of his neck, except it turned out it extended down into his chest area (poor little guy is likely in for another round of surgery) and we'd been warned it could flair up when he got sick. Sure enough, there was a bulge beneath his right clavicle. Then suddenly he was burning up—103 degrees burning up. Dave whisked him off to the pediatrician as I called the doctor who'd done the surgery to discuss the possibility of an infection.

No cyst infection, just a viral infection. Ben came home and lay on the couch. He didn't even want a lollipop, he felt that crappy. He nodded off. Dave and Max took off to get lunch. Sabrina said she'd keep an eye on Ben and I ducked out to the garden center and Bed Bath and Beyond and came home with a flower basket for our front porch (exciting) and a new non-slip plastic mat for our tub (sadly, also exciting since the old one was getting gross).

In the late afternoon, Sabrina headed to her lacrosse game with Dave and Max. Ben fell asleep early and I continued my Mother's Day celebration by reorganizing a bunch of shelves in the kitchen, putting new lights into the lamppost on our front lawn and sitting on the rocking chair in Ben's room and worrying about him. 

A little while later, Ben asked to sleep in our bed. At 1:00 a.m., he woke up and puked down my back as I carried him to the bathroom. I changed his clothes and mine and he fell back asleep but I couldn't. I was in that I-hope-he-is-OK/I-smell-like-like-puke-but-I'm-not-showering stage.

Dave left at 7:30 Sunday morning. Ben's fever was gone and he was back to his usual jumping-off-the-couch self but I wanted to keep him at home, plus it was supposed to rain the entire day. So we played with blocks (Ben) and watched videos of fire trucks on YouTube (Max) and SnapChatted (Sabrina) and jumped off the couch (Ben) and cleaned and decluttered (me) and ordered in pizza for dinner and had cookie ice-cream sandwiches for dessert and cleaned some more (me).

Sabrina made me this awesome presentation, proof that I am actually not the worst mother in the world. !!!

At night we watched videos of Max and Sabrina when they were little, and I had to will myself to not burst into sobs because WHEN DID MY BABIES GET SO BIG?! When did they lose their little-kid voices? How amazing is it that Max has made so much speech progress? When did they grow out of that chubbiness? How delicious were they? Why can't I go back in time and kiss and hug them? Sob.

In the end, I had a nice Mother's Day. It wasn't exactly relaxing, but I had fun with my gang—and I got a major reality check about savoring their childhood. Oh, and you can can bet I'm taking Dave up on his rain check to get a pedi next weekend and go to that gastropub.

Ben actually did give me my present, and it was his hand, Shrinky-Dinked, on a keychain. Just what I needed.

The Disability Blogger Weekend Link-up needs you

 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: 30 things special needs moms do—is this you?

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.

30 things special needs moms do—is this you?

Perhaps you have a child with cerebral palsy, like I do. Or you have a child with autism. Or Down syndrome. Or vision or hearing issues. Or ADD or ADHD. Or muscular dystrophy. Or spina bifida. Or cystic fibrosis or another genetic condition that causes disabilities. Our children may have different diagnoses and yet, we have so much in common. Is this you, too?

1. You've cried outside the doctor's office, outside your child's school, driving in the car, pulled over to the side of the road, sitting in the car in the driveway, standing in the shower, hiding in someone's bathroom, lying in bed at night.

2. You've had pangs of "Why him?" or "Why her?"

3. You've had pangs of "Why me?" too.
4. You've tortured yourself by obsessively reading and rereading the child development books and newsletters.
5. You've gotten past all of that (excluding the occasional sobfest after the IEP cause they can have that effect) and no longer consider your child's diagnosis a tragedy because your child has proven to be quite awesome and now you know: having a disability is one aspect of your child. Like any child, he is the sum of his parts—his personality, his brightness, his emotional IQ, his talents, his quirks.
6. You've developed, right along with your child.
7. You've bought enough toys for your child, in the hopes of stimulating him and making therapy fun, that your playroom could be mistaken for a toy store.
8. You celebrate the inchstones, right along with the milestones. Every new movement, every new sound, every bite of new food, every ounce gained, every single step forward is worth a squee!
9. You have also secretly cheered your child's dubious achievements, like throwing a bread roll across the table at a restaurant (grasping!), telling a lie (cognition!) or muttering a Bad Word (speech!).
10. You have watched your child undergo procedures and tests and surgeries and wished it were you.
11. You've paid, like, $45 for an adaptive spoon. Or crayon.

12. You've become a master of the "Why are you staring at my child and what's wrong with you?" look.
13. You've hung outside the restaurant/program/activity/event with your child while the rest of your family is inside because she's just not having it.
14. You've asked the therapist for more exercises to do with your child...then didn't do most of them. Or even any.
15. You've google-stalked doctors and phone-stalked their assistants to get appointments.
16. You feel like you practically have a medical, nursing or therapist degree. Or at least an honorary one.
17. You've felt like friends don't totally get it. But you've found online friends who do.
18. You've raided the snacks your child uses for feeding therapy.
19. You've slept on the floor next to your child's bed to make sure he is OK. Or let him sleep in your bed. Or crammed your body into his bed.
20. You fantasize about taking naps.
21. You fantasize about having a live-in speech therapist/occupational therapist/physical therapist/AGBA therapist.
22. You keep a copy of your child's medical records in your car, because you never know.
23. You are living, breathing proof of just how much stuff a single human being can remember to do—sign the forms! Call for a refill! Reschedule that appointment! Look into that program! And don't forget the kajillion other things!—without their head exploding.
24. You've listened as people have asked you questions about your child, as if she weren't standing right there. And then you've said, "Why don't you ask her?"
25. You've taken your child to doctor after doctor in hopes of finding answers until you've finally accepted that more doctors does not mean better care and can actually be quite depressing and maybe nobody has the answers right now and so you should focus on tending to your child's current needs and help him and enable him the best he can. Period.
26. You've learned to ask for the supervisor when you're on the phone with the insurance company. And their supervisor, if necessary. And that one time, you threatened to call your lawyer. Not that you have a lawyer. 27. You've roamed the aisles of the drugstore to relax.
28. You've managed to not lose it when relatives have said, "He'll grow out of it!" or "It's nothing!"
29. You've felt overwhelmed by guilt that you're not doing enough for your child. Then you accepted that you're human. Then you felt guilty again. Repeat, repeat, repeat.
30. You've become your child's biggest champion, spokesperson and publicist, that parent who doesn't shut up or let up. Someday, your child will hopefully advocate for himself but for now, you are there to make sure he gets what he needs and deserves.

Photo: Getty Images

Disabled parents helping parents of disabled children: a new podcast

Imagine if you had a guardian angel giving you guidance for raising your child with disabilities. Well, there's no guardian angel app just yet, but here's something that may be just as helpful: a new podcast series, Parenting Without Pity, in which disabled parents give advice on raising disabled children. 

 

Created by the nonprofit Rooted in Rights, a video and social media advocacy program of Disability Rights Washington, the series features disabled parents giving compassionate, reality-checked tips and insights. The podcasts go live tomorrow.

In anticipation of the podcasts, the organization posted interviews with two disabled parents that have good tidbits. Debra Kahn, a deaf and blind mom of two children based in Seattle, noted the importance of communicating with your child in whatever form that takes. Disability activist and mom of two Cierra Reid mentioned that parents often aren't aware of Centers for Independent Living.

Great idea for a podcast series, right? I'm looking forward to listening to them.

What does inaccessibility mean to disabled people? A hashtag goes viral

Back in March, writer/activist/podcaster (The Accessible Stall)/generally awesome human Emily Ladau started the hashtag #InaccessibilityMeans on Twitter. As she put it, "I'm excited to see my hashtag taking off but it also means that the world has some serious work to do to make it a more accessible, inclusive, accepting place for disabled people to live."

These are just some of the stories and photos people have posted:

#InaccessibilityMeans having to make choices: (a) Go to the THING (cafe, dinner gathering, networking, movie, board meeting, work lunch or anything to do w/ communication) and deal with ppl's frustration & awkwardness coz I can't hear/see/participate OR (b) Decline.—@ellenffb

#InaccessibilityMeans giving your presentation from the floor because you can't get up on the stage.—@Naranjadia

#InaccessibilityMeans that at my uncle's funeral I had to be taken down the hand-cranked, open-sided platform lift they used for coffins to get to the repast downstairs.—@MissJupiter1957

So angry at Yellow Cab Co. at Orlando Airport. My friend is traveling there with her service dog and she just sent me these text messages. Don't tell me #disability #discrimination isn't real. #InaccessibilityMeans #EverydayAbleism—@ConnConnection

#InaccessibilityMeans disabled people are far too often sent to side entrances, back entrances, and locked doors because they can't get in the front like everyone else. It means we enter places through sketchy alleys, freight elevators, and trash storage.—@emily_ladau

#InaccessibilityMeans not being able to go to the bathroom. I'm an ambulatory wheelchair user, but I don't feel stable walking in unfamiliar places. I was faced with the choice to shout my bathroom needs across the table to ask someone to help me or leave. I chose to leave.—@spazgirl11

#InaccessibilityMeans having to leave schools or colleges you wanted to go to. #WhyDisabledPeopleDropout. How common is this?! I felt like the only one and then ever since I started talking about this it seems a lot of people had to leave a campus for lack of access.

#InaccessibilityMeans means the @cta in Chicago not making ALL its el stops ADA complaint 27 years after the passage of the ADA. And don't get me started on the @MTA when I last visited NYC almost two years ago.—@LauraDurnell

#InaccessibilityMeans This sign at all elevators, telling disabled people that there is no plan for us if there's a fire. We are, I gather, expected to die quietly. This is legal.—@Cissyvoo

#InaccessibilityMeans broken friendships, because even after the umpteenth time telling your friends your accessibility needs, they'll say you're being too sensitive/demanding and decide to invite you to less and less.—@Imani_Barbarin

#InaccessibilityMeans being super hungry. But the meal is a buffet and you don't want to be a bother so you tell the other people the reason your not eating is that your not hungry. Really you can't eat safely and without mess carry your own food.—@Blemi

#InaccessibilityMeans having to announce yourself everywhere you go. Hi I'm here and I need an accessible entrance. Hi I'm here and I can't reach the tables. Hi I'm here and the aisles are too narrow. Always having to make someone aware that I'm there.—@hmkerstetter

So easy to cross the #rueducolisee #paris when a bicycle is on the floor in the middle of my way! #InaccesibilityMeans–@Stephanie_HRNews

#InaccessibilityMeans not getting groceries/household supplies/what I need because there is rarely enough disabled parking.—@itsonlymari

#InaccessibilityMeans getting asked to volunteer my time to consult (without pay) & legitimize disability projects that non-disabled people are getting paid to oversee. This form of labor abuse makes equal employment opportunity inaccessible.—@S_daVanport

#InaccessibilityMeans living in a world not built for you, where your needs are either an afterthought or not thought of at all.—@MikeeMort

As the parent of a child with disabilities, I couldn't know exactly how frustrating and maddening it can be to struggle to satisfy basic human needs—I'm there to watch over Max and make sure he is cared for. But I do know what it's like to have a child who at times has not been treated with equality and who has faced blatant discrimination. Some of the situations our family has contended with over the years:

—#InaccessibilityMeans your child can't enjoy the playground because there are no swings that give him the support he needs or adaptive jungle gyms.
—#InaccessibilityMeans a camp flat-out refusing to let your child attend because he needs help with life skills—even if he has an aide.
—#InacessibilityMeans your place of worship has no programming for children with sensory needs or intellectual disability.
—#InaccessibilityMeans having to carry your child into an auditorium/onto rides at a park/on a hiking trail/wherever because there is no other way for him to attend an event or enjoy an activity.
—#InaccessibilityMeans events at the school your child attends have no snacks he can eat because they are all hard, crunchy foods like potato chips or choking hazards like popcorn.
—#InaccessibilityMeans a program that refuses to admit your child because he needs a hand with toileting.
—#InaccessibilityMeans going to a birthday party at a gym or art studio where your child can only participate if you carry him around or help him hold the paint brush.

I'll be tweeting some of these today. Share here and please tweet, too. The more awareness we raise about the everyday rights and basic needs that people with disabilities are denied, the better.

What does inaccessibility mean to you? 

Image: Twitter/Stephanie_HRNews

And for once, nobody gave us a dirty look

Max and I traipsed through the rain yesterday to see the sensory-friendly performance of My Fair Lady, at Lincoln Center in New York City. To me, what was going on off-stage seemed as amazing as what was happening on it, and maybe even more so.

These shows are pretty awesome. They keep the house lights on, and the sound is a bit diminished. Staffers hand out rubber balls that can be squeezed for comfort. Members of the audience make noises and stand up and squeal and kick seats and do their thing and it's all good. 

Some kids near us had headphones on. (Max doesn't use those for shows anymore, but it occurred to me that maybe it wouldn't have been a bad idea to bring a pair on our London trip as some of the markets ended up being too much for him.) He was completely calm during the show, if a little bored despite my nudging him when favorites like "I Could Have Danced All Night" came on. I didn't have to worry when Max asked questions during a show (he typically needs guidance and does not exactly have an "inside voice") or got agitated. At one point, I heard him say "Daddy, I'm at the show!" and realized that he'd just dialed Dave from his Apple watch. Nobody around us cared, I told him he should wait till intermisison.

I felt lucky to be there, even if Max didn't totally feel the same. For many years, he did not even do do shows, and now we were lucky enough to be at a performance that welcome kids of all abilities.  If you've ever been to a show or movie with a child whose behavior disturbs other people, you know how tense things can get. Around me, parents did their best to help calm their children when they got upset, but for once they didn't have to stress out about being a nuisance or deal with hostile looks.

Sitting in that partially-lit theater, I felt like part of a community. Although we bumped into some people we knew, most of the audience were strangers. There seemed to be a lot of kids there with autism and Max has cerebral palsy, yet that didn't matter. It was that unique feeling of being surrounded by acceptance and understanding and people who get it. Unlike Eliza Dolittle, whose seeming speech imperfections (she didn't speak "proper" English) were treated with disdain by Professor Henry Higgins, the young people in the audience with autism and other developmental and cognitive disabilities could just be themselves.  

Afterward, we hung out by the Lincoln Center fountain for a bit. I used to come to ballets and symphony performances often before we had kids. Sometimes, when I stop by places I used to go pre-Max, I wistfully think about how carefree life used to be. But not this time. I was happy to be in a longtime favorite place with Max, glad to have a special day with him and lifted by our community.