Monday, May 20, 2019

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." 


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.

Friday, May 17, 2019

The Disability Blogger Weekend Link-up awaits 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: You never stop appreciating your child's wins

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, May 16, 2019

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.

Wednesday, May 15, 2019

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.

Tuesday, May 14, 2019

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.

Monday, May 13, 2019

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.

Friday, May 10, 2019

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.

Thursday, May 9, 2019

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 are 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.

Happy Mother's Day, supermoms.

Photo: Getty Images

Wednesday, May 8, 2019

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.

Tuesday, May 7, 2019

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

Monday, May 6, 2019

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. 

Friday, May 3, 2019

The Disability Blogger Weekend Link-up is good to go

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

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, May 2, 2019

Recess doesn't have to be so hard for kids with autism

The 55 kids with autism talked with other kids, climbed with them on the jungle gym and played tag, just like their fellow students. They also spent about a quarter of their recess time alone or with adults, such as teachers or playground monitors. They were being observed as part of a University of Washington research project, whose surprising results were reported on this week in The Seattle Times.

While children with autism may have trouble weathering the noise and chaos of recess, or have challenges reading social cues, they can do fine mingling with peers during recess, the study concluded. The younger children with autism were more likely to strike up a conversation than older kids, typically while at play. Assistant Professor Jill Locke, Ph.D., noted that the children's interest and motivation to join in on the playground should spur educators to find ways to make recess more inclusive for students with autism. For example, if a child with autism likes to sing, it could be incorporated into a game of tag—when the song ended, everyone could freeze.

A study like this may be small, and the struggle for many children with autism at recess and in other social settings is real. But it offers insights that may prove eye-opening to educators—and to parents who are dubious about how a typically-developing child might interact with one who has autism.

Encouraging children to interact with ones of all abilities is one of the best educations they can get.

Image: Getty

Wednesday, May 1, 2019

Do you have a shelf or closet full of hope, too?

I watched a vlog by my friend Pam last night; she narrates the series The Education of BT. It's about raising her son, Ben, who has autism. Pam is a teacher and she's saved a whole lot of toys and educational materials, some for more than 18 years, as she's hoped that Ben might one day enjoy them despite the fact taht he hasn't shown much interest. Around the time of his IEP, she likes to pull out a couple of things and this year, Ben surprised her.

I knew exactly how Pam felt about that closet full of hope. When Max was little, we went all out buying him toys to stimulate him, enable him to better move his hands and improve his focus and cognition. "It looks like a toy store in here!" friends would remark about our basement playroom. But so many toys ended up sitting on the shelves, unused by Max. At times, they were a painful reminder of all the stuff that Max wasn't yet doing. Still, I kept a bunch for years, because like Pam, I hoped that my son might someday use them. Then our basement flooded during Hurricane Irene in 2011, destroying most of its contents.

In the coming years, Max got into phases that involved buying favorite objects—in the color purple, anything having to do with Lightning McQueen and Cars 2 and then all the fire trucks. It was a thrill to see him take such an interest in stuff, as intense as his obsessions could be (some of you might recall our repeated rides through car washes rides through car washes).

At 16 years old, Max's main form of entertainment involves watching videos of fire trucks and cities he'd like to move to (currently L.A.). But he also, on occasion, likes to play with his little brother. He'll roll a car toward him, toss a ball or hand him blocks so he can build a tower.

It's never too late for breakthroughs.

Photo image: Flickr

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."

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