Friday, February 28, 2020

The Disability Blogger Weekend Link-up: It's germ-free!

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: 9 ways families can prepare for the coronavirus

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

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

Wednesday, February 26, 2020

The sad, sordid tale of the rubber duck and the toilet

One great thing about having a third kid spaced 11 years apart from your second kid is that you act and feel like new parents.

One bad thing about having a third kid spaced 11 years apart from your second kid is that you act and feel like new parents.

Which kind of explains how a mini rubber duck sabotaged our toilet and bank account this weekend. I'd thought that, by the age of 4, Ben was past the stage of tossing random objects down the toilet. It had been one of his favorite activities a couple of years ago, and various toys, clothing and an iPhone had all fallen victim. But now, he was a big boy!

Portrait of a toilet tosser at age 2

On Sunday, Sabrina was upstairs "watching" Ben when all of a sudden I heard her shout "OH NOOOOOOOOOO, BEN!!!" That did not sound the least bit good. I ran upstairs. Some backstory: a A couple of weeks ago, we'd had brunch at Sugar Factory, a trendy restaurant in New York, with out-of-town friends. It was a total disaster—mediocre food that was served cold and exceptionally slow service. The only win from the meal was a mini rubber duck that came with Ben's rainbow burgers. Oh, that duck was so cute! 

Well, Ben had taken that cute duck and flushed it down our toilet. And because it was a li'l guy, it had actually gone down the toilet. 

The Rubber Duck Terminator stood there, looking all innocent. 

"Bennnnnny, why'd you do that?" I asked. 

"He was learning to swim!" Ben explained. 


I posted about the situation on my local Facebook group. People noted there was a chance I could extract the duck by snaking it, as I actually own an auger. No such luck. I googled and found a thread on some random homebuilder board where a guy had said he'd used a wet-dry vacuum to suction a rubber ball out of a toilet. So I got out our trustworthy wet-dry vacuum, pulled off the rubber at the tip and sucked. Nope. The next step was to unbolt the toilet and look at the base, but the bolts refused to unscrew. 

The whole time, I had that Sesame Street song in my head—you know, the one Ernie sings:

Rubber duckie, you're the one
You make bathtime lots of fun

Rubber duckie I'm awfully fond of you

Not so much.

The thing was, that toilet was about 30 years old. I'd been waiting to get a new one until we did a bath reno. But I realized that I could call in a sewer guy to get him to fish out the duck, take out the old toilet, put in a new one and snake our house drain while he was at it, long overdue. So I booked one for Monday, when I was off work. Then I called a local plumbing supply place on Sunday to get a toilet, and they said they would actually deliver it by Monday. I just love it when a toilet can show up on your doorstep just like pizza.  

Ben, meanwhile, had other pressing matters on the brain: "Mommy! Is the duck OK?" 

On Monday morning, the sewer guy showed up. Only the water shut-off valve in our bathroom wouldn't budge so he had to saw the whole thing out of the dry-wall. Woo hoo! More to fix! Finally the old toilet was off. We'd thought the rubber duck would be lodged in the drain below but, no—it was actually stuck in the toilet base. The plumber poked a camera up there so Ben could see for himself.

"Can you get it?" Ben asked, in his most charming voice.

"Let's not, it's pretty disgusting!" I said.

"OK, Mommy, we can go to the restaurant and get a new one," he decided. 

As. If.

One thousand bucks later, making that the most expensive bad brunch in the history of bad brunches, we are the proud owners of a shiny new duck-less toilet. I am the not-new parent who's had to have a little discussion with my kid about not throwing anything down there again, other than t.p. He promised he wouldn't. Um.

Tuesday, February 25, 2020

Do you know what's going in your child's class?

A few weeks ago, I got a notice that Max would be learning about safety and personal space at school. So I contacted the teacher and asked her to fill me in after each session. She's emailed me notes, including a five-step plan on how to tell someone they are in your space or that you don't want to be hugged: 1) Face the person 2) Make eye contact 3) Use a strong voice 4) Stand (or sit up) straight 5) Say what you mean. Good advice for anyone, right?! 

For me, details like these are everything: Max learns best through repetition and lots of it, and I can reinforce what he's learning at home. At my request, the teacher who teaches him both math and English zaps me weekly emails explaining what he's learning about. His physical therapist, occupational therapist and speech therapist do that usually every other week. 

Letting parents know what kids are learning in school doesn't always happen organically, as you may well know. This can be especially challenging when kids are young and don't get homework, or when schools have a no-homework policy (that was the case with one of the high-schools I toured for Max; when I asked why, they said most parents felt their kids were too wiped out after school to do it, though it could be individualized). When Max first started elementary school, one day it occurred to me that I had absolutely no idea what was going on in class. While the teacher was very responsive to my questions, and told parents about special class activities like cooking or guest visitors, there was no communication about what the kids were learning.

I spoke with her about it, and she ended up starting a newsletter called Learning Link. For every subject taught, the list detailed what students were learning and what parents could do at home.

Trust me, I know we have enough on our plates to handle. Make that more than we can handle. It's such a big relief to not be fully in charge of one thing in your child's life (all the more power to parents who homeschool). Thing is, it's not like you always have to anything with the information you get from teachers. Sometimes, there's no time or will to go over stuff. There are days when Max is just done by the time I get home from work. Some days, I am just done, too.

But knowledge is power. Even if you're not going over schoolwork, once you have a handle on it you might find ways to organically work little teaching moments into your day. Like going for a drive and looking for the letter "D," watching YouTube videos about how electricity happens or whatever's fun. 

If you'd like a copy of a Learning Link template to share with your teacher or school, email me: lovethatmax [at] gmail [dot] com. 

Monday, February 24, 2020

Someday, you will find your new normal

Dave zapped me a photo the other night. He and Max had gone to L.A. for a boy joy trip, complete with a Carnival Cruise. Now they were partying with Jeff, one of Dave's oldest friends, to celebrate Jeff's birthday. For the record, Jeff doesn't usually wear a blond wig; he'd dressed up as Eddie Van Halen for the occasion. Max had dressed up as a person obsessed with Los Angeles who wants to move there, complete with the L.A. sweatshirt I'm pretty sure he wore every single day last week.

Max hit the dance floor as soon as he and Dave walked into the restaurant. Some woman took a liking to Max and danced with him for a while. Then a guy walked up to Dave, offered him a $10 bill and told him to buy Max a Shirley Temple.

Yep. Just another not-so-normal-for-other-people-but-normal-for-us week. All was good.

When Max was born, nothing in life felt normal. I'd had a baby who had a stroke: not normal. Max was at risk for vision problems, hearing problems, cognitive problems, cerebral palsy: not normal. I spent most of my maternity leave from work taking him to specialists and therapists: not normal. Max couldn't pick up toys. His hands were often tightly fisted. When I spoon-fed him, he dribbled most of it out. Not. Normal.

I didn't look at Max and think "not normal"—no, I just looked at my chubby-cheeked, bright-eyed, happy boy and worried about all the normal stuff he wasn't doing. I worried about when and if he would achieve normalcy, as in, reach developmental milestones. I worried about all the normal that seemed out of reach for him.

This is the lens through which many of us view life: what's normal, what's not. Perspectives are formed when we are young through our parents, teachers, and social circle. If you didn't have someone you were close to with special needs, then you see their needs as not normal. And I didn't grow up close to anyone with special needs.

Your sense of normalcy as a mother comes from your mom crew, whether they're your friends, the neighborhood moms or the ones at activities you signed up for. It is virtually impossible to feel any sense of normalcy when all the other moms are doing the usual things moms of new babies and young children do, and you are not. You feel alone. You feel isolated with your anxiety, because it is impossible for anyone to understand just how great yours is. You are oh so aware of how not normal your motherhood. You sit there in the baby movement class you signed up for, hoping to achieve some sense of normalcy, and feel acutely Not Normal as all the other moms chat animatedly as their babies crawl around and you sit there with your little one on your lap because he is not able to crawl.

What you don't understand, when your child is very young, is that you will find your new normal. Oh, yes, you will. It is hard to imagine or accept or even understand that this will happen, because everything feels Not Normal. But that will come. In the early years, you will continue to watch your child like a hawk for any developmental progress. You will continue to mourn the normal you lost. You will experience deep moments of sadness at communal activities, like being in the park or at birthday parties, where you watch the other standard-issue children doing their standard-issue children things and your child is not.

It will help you immensely if you force yourself to stop reading the developmental books and unsubscribe from the "Your child this week/month" newsletters. Me, I outsourced birthday party outings to Dave on several occasions when I knew I wouldn't be able to take it. It will seriously help you to connect with other moms of kids who have special needs because you will take deep comfort in the fact that you are far from the only one experiencing the Not Normal. Facebook groups are your friend. Maybe one of your therapists would be game to organize a local moms meet-up, as one of Max's once did. And maybe you could get some therapy, too. I did, for a while, because I didn't want to unload onto friends all the time or Dave. In the comfort of the therapist's office, I could sob my heart out and share my deepest anxieties and try to exorcise that grief from my heart.

As time passed, our family grew into our own normal. During Max's toddler years, getting help from therapists to enable Max and trusting doctors to guide us became normal. As Max got older, being the mom of the only kid at the party not able to jump on the trampoline or eat birthday cake without assistance got normal. Talking matter-of-factly about Max having cerebral palsy got normal, whether with relatives or curious kids. Making sure Max took his anti-seizure meds got normal. Programming a communication device and later a speech app to help Max communicate got normal. My identity as the mom of a child with disabilities normalized.

Dave and I also found our own kind of normal as parents. When Max would wig out at restaurants or events because the noise was overwhelming one of us would hang with him in the entry or take a walk with him outside and the other would stay with Sabrina. If Max was getting upset at a family event, one of us would sit with him in a quiet room. I was typically the parent to research treatment, attend IEPs and do therapeutic exercises with Max. Dave typically helped feed Max and took him on errands.

We began to do typical family stuff, like go to theme parks and beach vacations and—once Max's sensory issues subsided—go to the movies and shows. We did some atypical family things, like go through car washes a few times in a row when Max was obsessed with them. Or hang out at the local fire station, after Max decided he was going to be a firefighter when he grew up. But that not-normal family stuff was our normal.

And Max? He's just lives life as he knows it. He is aware he has cerebral palsy, but doesn't much talk about it or seem to want to. He's really social and is friendly with other kids at school, but Dave is his best friend and they are always off on adventures together, whether they're getting foot rubs or trying a new restaurant or going on a boys' trip where Max ends up dancing with a stranger and a guy offers to buy him a drink.

This life is not the normal I could have ever envisioned before I had children. But it is full of love and happy and fun and good. It is our normal, and I can't imagine any other kind.

Friday, February 21, 2020

The Disability Blogger Weekend Link-up: no political drama here!

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: Meet the grandma building accessible ramps out of Legos

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, February 20, 2020

Meet the grandma building accessible ramps out of Legos

Motherhood is the necessity of invention, the saying goes, but it also holds true for people with disabilities, who have to be resourceful in the face of access obstacles. Meet Lego Grandma, aka Rita Ebel, a 62-year-old woman living in Hanau, Germany, who uses a wheelchair. She got frustrated with the lack of accessible businesses in her town. So she started building mini ramps made entirely out of donated Legos, glued together onto large Lego baseplates.

There are now twelve of these colorful ramps in her town, and she's been sending building instructions to Austria and Switzerland, reports Reuters. Says Rita, "For me, it is just about trying to sensitize the world a little bit to barrier-free travel."

Image: Screen grab/Reuters video

Wednesday, February 19, 2020

Disney theme parks head to trial over accessibility

Five years ago, Disney theme parks changed their policy toward people with disability and access to rides and attractions. This was mainly due to abuse of the passes that allowed people with disabilities to move to the front of the line (scams included families hiring tour guides who had disability passes). Instead, Disney instituted the Disability Access Service Card system. We've used it a couple of times, most recently during our trip to Disneyland in December. Basically, you go to a kiosk and they give you a designated time to get on a ride. Once you arrive, you enter through the FastPass entrance or the accessible one. Sometimes this still involved waiting in a line, although Max tolerated it OK.

The new system upset a lot of parents and people with disabilities, including an autistic man in Orange County, Florida known as "A.L." who five years ago filed a lawsuit against Disney. The trial finally started yesterday, reports Disability Scoop, and is scheduled to last until the end of the week. The lawyer represents other families in Florida and California who've filed similar lawsuits.

Assigning people a time to go on a ride is a problem, the lawsuit notes, because not having a definitive schedule can cause stress and meltdowns for people with autism. A.L. had a very specific routine at the Magic Kingdom, per the Orlando Sentinel, one that may be familiar to parents of children with autism—he traveled "in only one direction, stopping at only the same places, in the same order, every time."

While the lawsuit is focused on individuals with autism, a reserved wait time can be an issue for any child with sensory issues or physical challenges. Max's sensory issues have largely subsided but when he was younger, it was impossible to know for sure what rides he would and wouldn't go on. He'd say OK, but then freak out when we got to the ride we were signed up for. Traipsing around made him get even more tired—for a child with cerebral palsy who can walk, theme parks can be especially exhausting. We've often ended up getting Max a wheelchair.

The stress and strenuousness of theme park visits for families of kids with disabilities is hard for some people to understand. Yes, these places are magical to our children of all ages and of course, they do want to be there. They've dreamed of it. But the physical and psychological realities of navigating the parks are part of the deal. Standing around in the hot sun while your child cries and screeches inconsolably as people around you gape makes it the unhappiest place on earth.

If Disney loses the lawsuit, people with disability access passes will once again be directed to the front of the line. Which is only right and fair. The truth is, unethical people will abuse the disability pass system in whatever form it exists. Making entrances to rides and attractions as simple as possible for people with disabilities should be the bottom line. Accessibility wins.

Tuesday, February 18, 2020

The mayor of the cruise ship

"Max is the mayor of the ship," Dave reported to me. He and Max are on their third day of a Carnival Cruise, headed to Ensenada, Mexico.

Max has winter break this week, Sabrina and Ben don't. Dave had some work to do in Los Angeles, where Max dreams of moving. Dave had air miles. Five-day Carnival cruises departing from L.A. are a very good deal. Max loves California. Max loves cruises. And so, a plan was born.

I had coronavirus paranoia, given how quickly anything can spread on a cruise ship (and as the Diamond Princess ship saga has confirmed). Dave got notice that the ship was checking passports to make sure nobody was coming onboard who'd traveled in China. That wasn't totally reassuring, but he felt OK about the trip so I repressed my paranoia. Kinda. [Excuse me while I google cruise ships and coronavirus for the bazillionth time.]

Max has been on a bunch of cruises and from the minute he got onboard, he knew just what to do. He and Dave immediately had a steak lunch at a restaurant. He danced at the sail-off party. He hit the teen club. He made himself pancakes and an omelet at the buffet. They visited Catalina Island and rented a golf cart, Max's favorite mode of transportation.

Dave told me yesterday that when he and Max were walking around the ship, crew members were saying hello to him left and right. This always happens when we go on cruises, and it reminds me what an asset Max's charisma is. Same goes for school visits. Dave has also called Max "The mayor of the school" because whenever Dave has visited, he's noticed that everyone who passes by says hello to Max.

I'm well aware of Max's charms, but seeing just how much people connect with him helps soothe that ever-present worry bubbling in the back of my brain: How will he function as an adult? What kind of work will he do? His good cheer will serve him well, no matter what. Actually, he'd be great on a cruise's social team. Or who knows, maybe years from now he'll be another old dude who lives on a cruise.

Max has been texting me that he wants to go on another cruise next February. He says he wants to show me, Ben and Sabrina the cruise. Isn't he nice?

Friday, February 14, 2020

The Disability Blogger Weekend Link-up: Long weekend edition

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: Juggling your child with disabilities and your other kids, too

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, February 13, 2020

When you and your partner disagree about disability

Every family has phrases that are on auto-play. Ones heard frequently at our house include "Get off your phone, now!" and "What's that smell?" and "Can we order in dinner tonight?" and "Thumbs, Max, thumbs!"

The latter is a reminder to Max to stop tucking his thumbs into his fist, otherwise known as "cortical thumb" or "clasped thumb." This is how his hands often look in repose, unless he makes a conscientious effort to relax his fingers. Dave is always the one to say "Thumbs, Max, thumbs!" Me, I don't bother.

For years, Max wore Benik neoprene hand splints to keep his thumbs open and unfisted. While they did the job, when he got older he wasn't into them and we didn't force them on him.When Max needs to open his fingers—to grasp a pencil, to pick up a spoon—he does. I am grateful that he has the ability to do that. It took years of determination and occupational therapy sessions for him to have some control over his hands. When you have cerebral palsy, your brain can have trouble sending movement signals to your muscles.

Dave notices the thumbs. "I just want his thumbs to be straight," he'll say, by way of explanation. I think part of him doesn't want Max to look different, although it's not like Dave doesn't accept Max for who he is. He is Max's best friend in the whole wide world, and the two of them are always out "galavanting," as Dave likes to say, whether they're getting foot massages or trying a new dim sum place. Dave is the one who brings Max to Home Depot to roam around. Next week, Dave has work to do in Los Angeles and Max has winter break, so Dave cashed in air miles and the two of them are headed there.

I've never said anything to Dave about his "thumbs, Max, thumbs" prompts, so we basically have a passive disagreement about this. We are generally on the same page about parenting and helping Max physically progress. From the start, we were determined to get him as much therapy as possible, to do exercises with him at home (er, mostly), to try alternative therapies and treatments (Max got stem cell therapy when he was six), to find gadgets that would enable him whether it was a gripper for our phone at home or cups with handles he can grasp. We're gleeful about his achievements, whether he's opening the car door on his own or tossing a basketball.

There's not much we nudge Max about in terms of his physical movements these days—mostly, we're working on standing upright when he climbs our stairs rather than clambering up on his hands and knees and encouraging him to dress himself as best he can. So if Dave wants to remind him to relax his thumbs, that's cool with me. It doesn't seem to bug Max.

Years ago, Dave and I were both obsessed with Max's hands. I remember going to the mall when Max was an infant and checking out the hands of every single baby we passed. Were their little hands fisted, like his were? We knew that spasticity was a sign of cerebral palsy, and we were scared that Max would be diagnosed with it. We got excited—yes, excited—when we spotted babies with fisted hands. But infants do that, and grow out of it. Max never did.

If only we'd known then that CP would not define Max. Yes, it can limit his movements, but he has  workarounds along with a "whatever I can do, I can do" attitude. He functions in his own way.

When Dave asks, Max unclasps his thumbs. And then, when Max isn't thinking about it, the spasticity kicks in again and they'll move back inside his fists. He's comfortable that way. He loosens up his thumbs as is necessary. Maybe someday he'll be more aware of his thumbs and care. But for now, he doesn't. And that's just the way it is.

Wednesday, February 12, 2020

You never know how your child or you will influence people

Yesterday, my friend Wendy's oldest daughter got into the Deaf Studies program at Boston University. I've known Skylar her entire life, and I was so proud of her. Skylar has known Max her entire life, and I thought about the influence he's had on her.

Skylar did not know what to make of Max when she was little. This was typical of most kids—they couldn't figure out why someone around their age wasn't talking or acting like they did. But over the years, Skylar came to see that Max was in many ways a child like any other, just one who needed some support. His disabilities were one part of who he was. He had a personality. He had passions. He was cool.

These are things that our entire circle of friends, family and neighbors has come to understand. Sometimes, it just takes one person with disabilities to help people get it. I didn't have that person in my life until I had Max. But Skylar did. More than one—the cantor at her synagogue has a son who's deaf, and Skylar got interested in learning sign language. And now, she's going to school to specialize in it.

I was talking with Wendy as I walked home from work last night, and we chatted about Max and Skylar. Wendy noted that Skylar reads this blog, and has been inspired by how I've advocated for Max. That got me thinking about how it's not just our children who can make an impact on other people. Social media influencers might be a big deal these days, but we parents are the real-life influencers who make people understand that we love our children with disabilities as much as any of our children. We help people see our children's strengths and talents and wonders. We make it clear that our children deserve to be enabled and included in every which way.

You don't need to have a blog or be on Facebook or Instagram to this. The people you know are learning from you all the time. No pressure! You are showing them the way without trying, in ways you've probably never even realized. Maybe not your Aunt Edna who thinks your child is a "brat" or that "he'll get over it" but lots and lots of other people. You are making them see that even if you've struggled with a diagnosis, your child is no tragedy. Your child is your awesome child and you are their no-stopping-them mom or dad. You are enabling them to rethink dated or clich├ęd perceptions of disability, and see children and adults with disabilities through new eyes.

You never do know whose life you will change. Remember that, Skylar.

Tuesday, February 11, 2020

The things you see in photos that other people don't

This is a photo of Max and a pal at the Night to Shine prom.

Maybe other people would look at this photo and see two happy teens.

I see that, too.

Here's what I also see:

I see these boys looking like any cute boys at any prom.

I see friendship.

I see maturity and independence.

I see Max flashing a peace sign, a gesture he picked up from a peer—not from me or Dave, cause we never taught him that. It is awesome to know your child is learning cool things from his friends.

And, whoa! He is holding those two fingers apart pretty well, a true feat of fine-motor-skills.

I see a boy who continues to evolve physically and cognitively. When he was a little guy, I just wanted the happy ending. Now I know there is no actual ending—and that's a good thing. When you have a child with special needs, there is no expiration date on progress.

When you look at photos of your child, I'll bet you see stuff other that other people might not see.

A head held up without support or a child sitting on his own, at last.

A hand that's not fisted.

A body moving in a new way—rolling over, propped up on hands, leaning on a couch for support.

Steps taken.

Your child looking straight into the camera lens, not something that always happens.

Your child holding a food or drink independently or trying a new one.

Your child participating in an activity or event you never thought he could.

Your child interacting with family or friends in a way you never imagined.

Your child loving life, despite grim predictions you may have heard from doctors. Perhaps they told you the worst but your child, so full of joy, did not get that memo. Your child who keeps proving them wrong. Your child who, to others, may seem not "typical" but who is perfectly wonderful to you.

Yes. This is what we see.

Monday, February 10, 2020

Juggling a child with disabilities and your other kids, too

This is a guest post by Leah Moore, a high school English teacher. She is a mom of three, including twin boys and a daughter with Cri Dru Chat, a rare chromosomal disorder. Leah blogs at Loving You Big; her writing has been featured on Scary Mommy, Erma Bombeck Humor Writers and The Mighty, among others. Her short documentary about Cri Dru Chat has been raising awareness about the syndrome. The following is an excerpt from her first book, which she is working on publishing.

I was cutting the last of the grapes into fourths, when I shooed away a familiar feeling. My daughter has once again bitten me in the butt. Sharp teeth against denim.

I’m not sure what is more unnerving: that I was bitten or that it doesn’t phase me anymore. It has become the norm. Her mouth is the exact height of my derriere, she has learned biting doesn’t hurt me, and it immediately makes her needs known. I can tell she is about to lose it. Her usually sweet disposition will soon be replaced by a shrieking stranger. I have had seven years of practice to anticipate these breakdowns since the addition of a new word to our household. Cri Du Chat. In French, it means "Cry of the Cat." In medical school, it is a deletion of the fifth chromosome. In the doctor’s office, it means tracking microcephaly to accurately measure head growth. At my kitchen table, it means my daughter.

The diagnosis, first discovered by French geneticist Jerome Lejeune in 1963, occurs in 1 in 50,000 births. However, her “unremarkable birth,” a term used when nothing medically abnormal occurs during delivery, suggested we were not in this exclusive group. Yes, she needed surgery to correct a birth defect and she was choking in the nursery, but we were assured it was nothing out of the ordinary. We were new parents, everything was out of the ordinary.

At six months old, I thought it was cute when a woman at the airport asked me if I was holding a kitten wrapped in a blanket. "That’s just her little cry," I remarked, never possibly knowing the "cat-like cry" was the French translation of the syndrome. I also couldn’t have known this curly haired giggle monster, heading to visit her Grandparents, was also facing a future of hypotonia, lack of self regulatory behavior, and severe intellectual and physical delays.

When my eleventh-month old daughter was at the same developmental milestones as a newborn, we increased the early intervention and sought answers.

On the way home from the geneticist’s office, after hearing the news, "It is Cri Du Chat. We don’t know if she will ever walk or talk," I had to pull the car over to cry. When I looked into the rearview mirror, I saw my daughter looking at me, laughing. She probably thought Mommy looked very silly. In that moment, when my greatest fears were realized, I just needed to look at her. She was exactly the same. The chubby-faced baby I carried into the doctor’s office was the same one who came out. She would still need dinner when we got home and curl up on my lap to read Goodnight Moon before bedtime. The world of tummy time, play dates, and birthday parties were replaced with forty hours of therapy, year round schooling, and fear. Would I be able to keep her safe? Would our marriage handle this stress? Would we be able to provide for her?

I recalibrated what motherhood looked like. I became her advocate. I received formal training to put my "oxygen mask on first," I filled my world with the strongest support systems, sought the best educational placements, and interviewed the most knowledgeable doctors. I learned to speak aloud what others only feel in silence; it is possible to find a balance of heartache and happiness within the same home.

My attention turns to the frustrated face before me. I de-escalate the situation by handing her a perfectly cut bowl of grapes and she meets the calm in my voice with the gratitude in hers. As I turn back to the kitchen counter, I feel another bite.

I pull back, this time, not facing my seven-year-old daughter with special needs, but my two-year old son. He’s standing there smiling, holding out a bowl, waiting for his portion.

I use my formal parenting voice: "We don’t bite."

"Ok. Grapes, please."

Next week. Same butt. Different son.

"We don’t bite."

"Ok. Grapes, please."

There is a ripple effect of raising a special needs child. All this time, I was concerned about managing my daughter’s behaviors, I never realized her twin brothers were watching, studying, learning. They did not see her limitations, only her actions. They didn’t know how incredible it was that she learned to stand independently at the counter or that her yelling at me was something I only dreamed of hearing one day. In some cases, I condoned behaviors that would otherwise be unsuitable, and my sons would learn those behaviors too. If she received a bowl of grapes by biting, they would too. They weren’t acting out. They thought this was the way things were run around here—"No please, no thank you, just bite."

My husband and I are raising a child with special needs and two little parrots. Our home is not defined by our daughter’s diagnosis. It is defined by palpable joy you feel upon entering, knowing the children are practicing kindness, empathy, and perpetual toilet training. We give our sons language to understand their sister sometimes needs more help. They will live with her diagnosis everyday of their lives. She will one day go from their big sister to the sibling that needs a caretaker. She will be their responsibility to care for. That is a lot of pressure to put on two boys in diapers. So, for now, we just enjoy being a family.

When she is too fatigued to leave the children’s museum, her brothers will stop and attempt to carry her to the door with their thirty pound bodies.

When it’s time for her nightly medicine, she calls for her "doctor brothers" who enthusiastically administer the syringe and milk.

When we go to the grocery store, she makes sure they are safely in the cart while she gets to push the cart and dance beside them.

When one of the boys gets a shot, she holds their hand and whispers, "I will help you."

When we go to the park, even though they are running at different speeds, they all play tag together.

Yes, our boys are being raised with a sister that may need more than they do. There are days they will not get the same amount of attention; there are also days the boys will get more. Her life will interrupt the stereotypes that surround disabilities. She is a not a burden. We are not sad. Her life creates joy and her diagnosis begets advocacy. We are raising three very different children and we will define our parenting successes by them knowing they are each seen as the individuals they are.

Yes, we live in a home where unusual occurrences are usual for us. Most people are not ending the day with teeth marks in their rear, but most people are also not ending the day with a dance party where all five members of the family are wearing matching wigs. These are the nights I am most grateful my sons are watching.

Friday, February 7, 2020

The Disability Blogger Weekend Link-up awaits your posts

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: Breaking: Teen cleans kitchen floor without being asked to

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, February 6, 2020

A disability rights film gets big buzz at Sundance

Held every winter in Park City, Utah, Sundance is the largest indie film festival in the United States. This year, Taylor Swift's Americana got big buzz. But so did another movie that debuted that same night: Crip Camp, reports the AP News. It won the Audience Award.

The documentary takes a look at Camp Jened, a camp for teens with disabilities in upstate New York run by hippies during the sixties. A number of campers went on to play prominent roles in the disability-rights movement, including Judith Heumann, who sued to become the first wheelchair-using teacher in New York in the late '70s.

Told from the POV of former camper Jim LeBrecht, the movie tracks the longtime fight for civil rights from summers at the camp to today. It's the second film produced by Michelle and Barack Obama's production company, Higher Ground. Said one reviewer, "You can't come away from this film without feeling awed, moved and not a little bit of ashamed of just how these activists have been forced to fight to be seen and treated as human beings."

Crip Camp will be up on Netflix in March, and I can't wait to watch it with the family. I'd like us all to understand just how far we've come with disability rights, and for Max to see the power of advocacy in action.

Wednesday, February 5, 2020

Including people with disabilities in voting starts with all of us

Yesterday my friend Cindy drove a man to vote in the Iowa Caucus. Cindy is someone I've only ever met online but she happens to be one of the better people in this world. That explains how she ended up escorting Raymond, who lives in Des Moines and needed a ride because he's in a wheelchair and the caucuses are notably inaccessible.

Vox ran a story a couple of days ago about the situation. Paper ballots are not an option, so voters have to travel to one of the state's 1,678 precincts to participate. The rooms are crowded. Seating can be an issue. As caucus-goer Emmanel Smith, an advocate with Disability Rights Iowa, told Vox, "If somebody backs into my wheelchair and falls and topples me, I'm going to get badly injured."
Smith and the people he works with hosted their own caucusing event, after having learned the rules.

The lack of accessibility at the Iowa Caucuses is reflective of the bigger problem this country has with disabled voters and voting.  This post by The PEW Charitable Trusts summed up issues that include untrained poll workers who may not correctly operate accessible voting machines (if at all), places that may not be wheelchair-accessible at all or provide adequate privacy for voting, and  limited access to registration materials, too. How undemocratic is that?! Not to mention the fact that politicians have often failed to reach out to the disabled population.

There is progress. Despite the challenges voter turnout is on the rise—it surged 8.5 percent in 2018, per a report released by researchers at Rutgers University. This year marked the first time an Iowa Caucus was lead in American Sign Language, reports The Guardian. In 2018, OmniBallot—an accessible online voting system available via computer, tablet or smartphone—was deployed in more than 400 election jurisdictions in America, according to Since its launch in 2015, more than 1 million voters with disabilities have used the system, notes the Zero Project, a nonprofit focused on the rights of persons with disabilities globally.

Max turns 18 in December, a month too late to vote. But I'll be taking him, Sabrina and Ben with me when I cast my ballot. Sabrina and Max were in the booth with me  in 2016, and they each pressed the buttons. This election, I'm hoping to help Max better understand the whole process. He thinks Donald Trump is a laugh riot, because he and Dave used to watch the Alec Baldwin skits on Saturday Night Live and Max remains convinced Alec and Donald are one and the same. Hmmm.

If you'd like to help with rides this election year, or are a voter with disabilities or know someone with disabilities who will need a ride to vote, reach out to Carpool Vote and Drive the Vote. You can also search this nationwide list of volunteer transportation providers, or reach out to the campaign office of local candidates. My friend Cindy had heard that ground support was needed in Iowa, drove there from Chicago and through Elizabeth Warren's campaign got a list of people to call who needed rides.

#CripTheVote, a nonpartisan campaign aimed at getting candidates to address issues relevant to people with disabilities cofounded by Andrew Pulrang, Gregg Beratan and Alice Wong, is holding a twitter chat on debate accessibility on February 12 at 7 PM Eastern Time (4 PM Pacific/5 PM Mountain and 6 PM Central). Here's more information on that. And for other inspiration and resources, check out the REV UP Campaign, launched by American Association of People with Disabilities to promote voter turnout.

Oh, and also check out this video series by Samuel Habib, a disabled young man (some of you might know him from the film Including Samuel) who's been meeting presidential candidates and and asking them about disability issues.

Tuesday, February 4, 2020

Proms for teens with disabilities: Yes, they're a good thing

Next Friday, Max will get dressed up in a button-down shirt and khakis. Dave will drop him off at Night to Shine, an annual prom for teens with disabilities sponsored by the Tim Tebow foundation. Max will meet up with his designated buddy for the evening. Then Dave will take off and Max will have the time of his life—he'll walk a red carpet, dance, eat dinner, take a limo ride, do karaoke if he wants to.

The event is in its sixth year, with 115,000-plus guests in 34 countries expected to attend and 215,000-plus volunteers hosting. There are also assorted indie proms just for teens with disabilities happening around the country, like the Ignite the Light prom that happened last Saturday night in Johns Creek, Georgia (above, a photo of last year's); the A Night To Remember prom on April 20 in San Diego for young adults ages 15 to 22; and Shine Prom in Alabama, coming up on May 24 in Meridian, Idaho.

I think it is important for proms at high schools to be inclusive of students with disabilities—inclusion should extend into all aspects of school. That's why I used to think that proms for kids with special needs unnecessarily segregated them. Part of my feelings were tied up in the fact that Max didn't have friends without disabilities; his social life has always consisted of friends he had at school and ones he mingles with at events, and I felt that meant it was lacking. Max is a really social kid—shouldn't he have friends of all kinds? Why can't typical kids see how awesome he is? I'd think.

But I've come to accept reality: Friendship with so-called typical peers was hard for Max because of their very different interests. I've had to learn to stop projecting my idea of what a friendship circle "should" look like and accept Max's idea of contentment. Which is, basically, a key part of what parenting your child with special needs is all about.

Proms for teens with disabilities let them revel in their friendships and romances on a special, festive night. They enable teens who need an extra hand to get one from a peer or adult partner, and be independent from their parents. Cause what teen wants to party with their parents?! While I hope that teens with disabilities feel as welcomed at their school proms as any teen, it's awesome for them to have options. Proms for teens with special needs don't segregate them; they celebrate them and their friendships.

Max is perfectly content with his social life. Last Friday night, I dropped him off at his school's pajama dance. I watched as he greeted his friends with high-fives and mingled before he saw me watching and, pointing to the door, mouthed "OUT!" As this mom spy sheepishly trudged out, I noticed Max huddling with a few friends, discussing something. I was curious to know what but, really, it was none of my business.

Monday, February 3, 2020

Breaking: Teen cleans kitchen floor without being asked to

In a shocking development, a teen has cleaned the kitchen floor without being asked to do so.

The event occurred over the weekend when Max S., 17, poured himself a cup of water from the refrigerator water dispenser.

"I was happily watching him help himself to water," said his mother, Ellen S. "This is a new skill for Max, who has cerebral palsy and some challenges using his hands. He opened a cabinet, took out a cup, poured himself a cupful and drank it all on his own. It was awesome."

During the process, Max splashed some water onto the floor.

"Usually in our house, when anyone spills anything on the kitchen floor—water, apple juice, bread or cake crumbs, rice, lasagna, yogurt, pickle juice, ketchup, milk, soy sauce, you name it—it just sits there until I clean it up," said Ellen. "I mean, I could leave a spill there for days, a week, maybe two weeks, maybe a month, maybe a whole year, maybe ten, maybe forever and nobody would touch it. What's up with that? Why are moms the only ones who ever notice the floor is dirty?!"

Not this time. As Ellen watched in astonishment, Max grabbed a dish towel, bent over and wiped up the floor. "Then he flashed this big grin at me," says Ellen. "He was so pleased with himself. And I was so excited for him. The whole thing was an impressive feat of fine-motor skills, not to mention, the core strength and balance he had to use to crouch down!"

When asked about his breakthrough cleanup, Max—who dreams of moving to California—said, "This is not my real home. Los Angeles is my home."

Ellen sincerely hopes that this is not the first and last time someone in her family cleans the kitchen floor.

Asked why they never clean the kitchen floor, the rest of the family—Dave, Sabrina and Ben—declined to comment.

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