Friday, October 19, 2018

The Disability Blogger Weekend Link-up is here to host 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: Nike gives runner with cerebral palsy a contract: 5 things the viral video doesn't tell 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, October 18, 2018

Need more silliness in your life? Here ya go


Last night, Sabrina had homework to do and it was getting near bedtime for Ben. So I did what any good parent would do: for 15 minutes, I had them to recite "I'm a chubby bunny" so I could record them for all posterity. You've probably heard of the game—stuff marshmallows into your mouth then repeatedly say, "chubby bunny." Except it's also fun when you just smoosh your cheeks together. This is just one of many useful talents Sabrina picked up at camp this summer, and she's taught it to Ben. Her version goes: "I'm a chubby bunny, I like to eat marshmallows and I give big kiss, mmmwah!"


At times, life has felt intense lately—Ben's getting surgery in a few weeks to remove a congenital cyst in his neck and I'm having pre-op freakouts although I know he'll be in top-notch hands, there was a crime in our area involving a home invasion, a dad I knew died from a stroke and a young mother committed suicide, we're starting to figure out Sabrina's plans for high school, the industry I love and adore (magazines) is going through changes. But then, how do you feel stressed or sad when there's chubby bunny?

When Max was a little guy and I was a walking ball of anxiety, one of the only things that would cheer me up was to dress him in this navy velvet sailor suit a friend got for him and take photos. He look ridiculously adorable. For a little while, I wasn't thinking about his development or what the future held. I was giggling and relishing Max's yumminess.


It's impossible not to be in the moment when you're being silly, as Ben regularly reminds me. We have silly conversations, like this:

Ben: "You no go to work today! I go to work today!"
Me: "But Ben, you're going to school!"
Ben: "No! I go to work! You go to school!"
Me: "But Ben, I'm too big to go to school!"
Ben: "No, you little!"

We play silly games, including not-hide and seek in which he hides and announces "I hiding behind the couch!" and then I walk into the living room and stand right in front of him and pretend not to see him.

Sometimes, he likes to grab stuff—my phone, a magazine I'm reading, the mail—and dash off and do laps around our first floor, and I'll chase him a bit then go the other way and surprise him and we both laugh so hard. 

Silly therapy: It's the best. Wishing you some chubby bunniness today. 

Wednesday, October 17, 2018

Disney Cruise Magic for all


My family was super excited about our cruise on the Disney Magic. We couldn't wait to see Ben meet Mickey and the gang. I was looking forward to it, too, but I had one big concern. Max has loved the kids club on cruises, and staffers have been wonderfully accommodating. Now, though, he'd go to the teen club. I wasn't sure if he'd be OK with that, or how the logistics would pan out given that at times Max needs a helping hand. For our last cruise, we'd done an Autism On The Seas program. Would Max be engaged and occupied this time around? If not, there would be no smooth sailing for our family.

The cruise left from New York City, where I grew up. Passing under The Verrazzano-Narrows Bridge I've driven over countless times: cool.

In the lobby.

Before families get on the ship, staffers announce their name. Max got his wish: "Please welcome aboard Fireman Max!" They greeted the rest of us separately. 

The Sailing Away party. Max used to be scared of it, but there he was, dancing onstage. 

At first, Ben was completely enchanted/starstruck/pinch-me-I'm-dreaming when he met a character.

Cinderella? Tee hee!

He warmed up to Minnie Mouse....

...and Chip and Dale, who he insisted were squirrels. 

Max was as happy as ever to hang with Goofy. Dave, too.

Nothing like seeing an old BFF

Even the most sophisticated teens cannot resist the lure of a princess.

The ship had a wide variety of activities, with bonus Halloween fun. We watched fireworks on Pirate Night, went trick-or-treating in the lobby, played Wheel of Fortune in the lounge, enjoyed evening shows including Twice Charmed and one with a ventriloquist, met up with other tots at Toddler Time (Ben), got a manicure at the spa (Sabrina), saw Incredibles 2 twice (Max),  hid from the family and read a book in the adults-only area (me). 

There was the magic of Mickey Pops...

...and a sunrise somewhere over the North Atlantic...

...and an equally glorious sunset...

...and date night...

....and a stop in Bermuda, the NY cruises's maiden voyage there...

...and watching Disney movies on the big screen on the top deck...

...and lounging in a porthole...

...and showing your little brother around the ship...

...and coming back to your cabin at night to a towel-animal creation...

...and chilling in the Splash Zone...

...and exploring the Kids' Club.

I'd brought an ID bracelet for Max to wear just in case (Road ID's are the best). Turns out I had no reason to worry: After Max hit the teen club, Vibe, on his first day, he only wanted to be there. I'd found out in advance that there is usually at least one counselor present, and that he or she could call us on our ship phone if Max needed to leave or chat with us. We knew that the club could not guarantee one-on-one attention. But it's always been our experience that they are able to offer that, to some extent. Sure enough, there was the wonderful Kathryn from Australia. She unhesitatingly agreed to alert us when Max needed a hand with the restroom. Our trusty waiter had meals delivered to Vibe, and she helped set Max up. We barely got Max off the ship when we docked in Bermuda. 

With Kathryn

Max played virtual bowling. He watched movies. He did crafts and made a drawing of the Dream—the next cruise he wants to go on—with help from Alejandra from Mexico. He downed copious amounts of mac 'n cheese. He didn't go in the pool once or do any activities outside of Vibe, and he couldn't have been happier. It was his kind of magic. 

Tuesday, October 16, 2018

Unhappy birthday to you


I knew thing were not headed in a good direction when Max kept insisting that Friday wasn't Ben's birthday, even though he knew full well it was. I wasn't sure what was up, but it was all revealed that night, when we went out for dinner.

Ben had decided he wanted rice and beans for his birthday meal, so we headed to a cute little Mexican restaurant. Max hesitated to go in. Then he said that he didn't want us to sing Happy Birthday to Ben. I figured he just didn't want to deal with the noise level. He's gotten past a lot of his sensory issues, yet not completely. We sat down. Max insisted on sitting at the next table over with Dave. OK, then. I just wanted to keep the peace.

The birthday boy ate chips and a strawberry smoothie for dinner. He was quite happy. Then the nice server found out it was his birthday and soon, she and several staffers approached our table with a piece of cake and a candle. And of course, they started to sing "Happy Birthday."

Max erupted into howls, screeches and tears. "Noooooo!" he yelled. He said something about the Disney Cruise, and I realized he was pointing out that we had already sung Happy Birthday to Ben during dinner when we were on vacation last week. Ah.

Dave took Max outside to calm down as Ben blew out his candle and enjoyed his cake. I paid the bill. When we left, I told Max that it was not nice to behave that way on Ben's birthday. "You wouldn't like it if Ben yelled on your birthday, would you?" I asked. He didn't answer. I said I didn't think he should go to the dance at school that night because of his behavior. He roared some more.

Later, Dave and I agreed he could go—Max doesn't have many opportunities to socialize with friends from school—as long as he sincerely apologized to Ben. "I'm sorry!" Max told Ben, and broke into tears. He seemed genuinely contrite. "It's OK, Max!" Ben said.

It was a side of Max I hadn't really seen before: jealousy. Ben's had parties for his first and second birthdays, but this time around got to Max—who's certainly had his fair share of attention over the years. I felt awful for Ben, but he didn't seem fazed by what happened. Nothing that years of therapy down the road won't cure!

Ben's party for his little friends, at a gym, is coming up in early November. We'll be having plenty of discussions with Max before then about letting Ben enjoy his special day.

Max: a work in progress.

Parenting: a work in progress.

Our family: a work in progress.

Monday, October 15, 2018

Nike gives runner with cerebral palsy a contract: 5 things the viral video doesn't tell you


Over the last few days, people kept sending me links to the story of Justin Gallegos. As you may know by now, he is a junior at Oregon University and a cross-country runner in the track club who has cerebral palsy. On October 6th, World Cerebral Palsy Awareness Day, a Nike representative was waiting for him when he finished a race to present him with a three-year pro athlete contract. People around the country have been bawling over the video ever since. Me, too. Gallegos' sense of accomplishment was so palpable.

 

A few things people wouldn't know from watching this video:

• Justin Gallegos deserves a contract not because he is a person with disability who is "trying" to run but because he's got real athletic cred. A respectable time for running a half marathon (13 miles) is two hours; Justin ran his first one in April, at 2:03:49. He aspires to run a full marathon, and to become a Paralympian. Let's hope that Nike continues to give contracts to athletes with disabilities.

• Justin started running as a high school freshman. Like every other outstanding athlete, he got where he is with a whole lot of practice—or as he noted on Instagram, "Hundreds of miles, blood, sweat and tears has lead me here, along with a few permanent scars!"  

• Justin does not "suffer" from cerebral palsy, as the video notes. That word implies he has a reduced quality of life because of his condition or that he is a victim of his disability—hardly the case. You can have a good life and have CP, as I know from raising Max. As Justin told CNN back in May, "You are not defined by your body—you are defined only by your mind."


• Justin is the first pro athlete Nike's appointed with CP. Yes, it's about time—Nike has hundreds of athletes under contract—yet Nike is once again leading the way. Six years ago, the company customized basketball sneakers for a young man with CP who was having trouble tying his laces. A few years later, it came out with FlyEase, sneakers with a wraparound zipper around the heel that make it so much easier to put them. Max has a pair, and they're awesome. 

• Justin's said, "I was once a kid in leg braces who could barely put one foot in front of the other." Cerebral palsy affects everyone differently. Some people walk or run; some get around using wheelchairs and walkers. Some people do not have intellectual disability; some do. Some people have spasticity in one arm or leg; some have it in all four limbs. Max has spastic four-quad CP, which means he has tightness in all limbs. He used to be a kid in a walker taking things one step at a time. He is also full of determination. Early one morning, during our recent cruise, I watched him dash around on the deck. He was running for the pure joy of it and I felt so happy, too.


Images: Elevation Om video screenshots/YouTube

Friday, October 12, 2018

The Disability Blogger Weekend Link-up: just do it


What to do if you're new here

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: Love That Max: I don't care what you think about my parenting. Mostly.

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, October 11, 2018

This is three


"It's a sunny day!" These are the words I wake up to most mornings. Ben's sleeping in our bed, and while his tossing, turning and kicking mess up my sleep, his a.m. announcements make up for it. My heart will ache when he stops saying this.

Ben turns three tomorrow. Three! Friends ask how that can be. I'm not totally sure; it doesn't seem like that long ago when I was holding him in my arms in the delivery room. And yet, I have two teens, and I know all too well how fast time zooms by. I am savoring every bit of his little-ness: His sweet little voice, those little dimpled hands, the little teeth, the little nose, the little toes, the wispy little curls that crop up when it's humid outside, the little-man collared shirts, the little sighs he makes when he sleeps, his little lips OMG his lips.

His presence, however, is big—so much so that it can shift our entire family dynamic. When Max is having a hissy fit or Sabrina is out of sorts about something or Dave and I are arguing, just a few words from Ben can make us crack up. "I need chocolate now!" he'll announce. "I have doodie!" usually brings the house down. (We are an easy audience.)

His bossiness is equally impressive: "I no do that!" he likes to say about everything from eating lunch to getting in the car. Recently, I was on the deck cleaning up and he was down on the lawn. I heard funny noises and peeked over to see him jumping off the lounge chair. "Ben! Be careful!" I said. "You go clean!" he commanded, pointing me away in the hopes that I wouldn't see what he was up to.

Boyfriend is sharp, too. We were hanging in a new play area recently, and there was a big slide. Usually, he's into slides but this one intimidated him. "It's not scary, it's fun!" I told him, encouraging him to climb up. "You go!" he said. "I'm not going down, I'm too big," I told him. "It's not scary!" he informed me. And so, yep, I went down first.

Baby Boss, as we like to call him, is fond of saying no for the sake of saying no or arguing just for fun. This morning, as I was leaving for work, I said: "Ben! Do you know what tomorrow is?"

"Friday!" he said.

"And is it your birthday?" I asked.

"No! It's Max's birthday!" he said, grinning.

I can't wait to see what three brings. Love you, little guy.

Wednesday, October 10, 2018

I don't care what you think about my parenting. Mostly.


We took the kids on a five-day Disney Cruise last week and had a whole lot of fun (more on that another time). There were about 2000 passengers on the ship. The funny thing about cruises is, there are inevitably a couple of people you keep bumping into again and again. Julie was one of them.

Julie and her family were standing on line in front of us at the terminal, waiting to board. Max was having an epic meltdown because he was over-stimulated. We'd been trying our best to keep him calm, but it wasn't working.

Before our trip, Max had watched a whole lot of "We surprised our kids with a Disney trip!" videos on YouTube. He knew full well where we were going, but as we Ubered to the port he made us stage a "surprise, Max, you're going on a Disney Cruise!" video. Once we arrived, he was determined to videotape every single moment. Then the iPad dropped out of his hands a couple times, which made him grumpy. Then we had to check-in, which didn't take long at all except Max had to put the iPad down to get his picture taken, and that set him off.  

So Max stood on the long line of guests waiting to board, screeching and screaming. This one man ahead of us was full-on gawking. "Stop staring!" I snapped. That's when Julie leaned over and said to Max, "You must be so excited!" And she kept talking to him. Was it his first Disney Cruise, which characters did he want to see, was he going to dress up for Halloween, her family was going as the Alice in Wonderland crew. Max soon calmed down, and I felt so grateful to her. 

The next day, Dave said he'd seen Julie at the breakfast buffet. He mentioned that she ended up keeping an eye on Max while he took bathroom break. They talked about Max's behavior getting onto the ship. "Your wife told him he was going to go home if he didn't stop!" Julie said, wondrously. Yep, I had, because: I am not beyond empty threats.

Next up I saw Julie as I was walking around the boat by myself, book in hand. "Where are the kids?" she asked. Well, Dave was with Ben in the kiddie Splash Zone, Sabrina was...somewhere and Max was at the teen club, Vibe. "He refuses to leave!" I said, not joking. Really. Max only wanted to be there. "He doesn't want to go swimming or do any of the activities?" she asked. "Nope, he's doing what he likes," I answered. She looked a bit dubious.

Then I saw Julie right before we were going to have a little birthday celebration for Ben at dinner. She wished Ben a happy third birthday. "Where's Max?" she asked. "At Vibe," I said. "He didn't want to come to dinner." Julie looked at me. "I couldn't force him!" I said, cheerfully. 

Then I saw Julie at the movie theater. "Did Dave tell you about breakfast the other day?" she said. I got the full story: Dave had left Max standing at entrance to buffet when he went off to the bathroom. Max wandered in, grabbed a box of Rice Krispies and stood there, waiting for Dave. Julie noticed staffers were eyeing Max with concern, and one of them started leading him to another family's table. So Julie hung with Max until Dave came back. "I was glad to be there for him!" she said.

Meanwhile, Max was at the movie theater to see Incredibles 2 for the seventh time, and I was about to leave. "I saw it once, loved it, and that's my limit!" I chirped. "He'll be fine here alone." 

Once again, she looked at me dubiously.

"Oh, we've let him go to movie theaters on his own!" I said. "He's pretty independent. He likes to do things himself, like any teen."

Then I made my escape.

At our subsequent Julie encounter, Dave saw her in the lobby and she said "High-five, Max!" and didn't acknowledge Dave's presence. "She thinks I'm the worst Dad!" he noted.

Then I saw Julie at a show on the last night, seated a couple rows behind us. "Where's Max?" she asked. "At Vibe," I said with a half-grin. Julie: "Oh!"

Did I mention that Max wore the same exact outfit two days in a row? Or that Ben basically had chocolate smudges on his face at all times due to his newfound addiction to Mickey ice-cream pops? Or that we supplemented his diet with bowls of chocolate ice-cream from the free soft serve machine? Or that when we stopped in Bermuda Ben walked out of a store with a keychain before a store employee collared him? Or that as I lay on a lounge chair and Sabrina came by and said "MOMMY! Let's do something!" I said, "I need to finish this book first!"

Sometimes, I have these out-of-body moments in which I see me the way strangers do, i.e., a rather suck-y parent—unable to control meltdowns, abandoning our boy at the teen club, not insisting he attend his little bro's birthday celebration, leaving him alone in a movie theater. But then, I snap out of it.

When Max gets into a mood, sometimes nothing can get him out of it although Julie broke the meltdown spell. When Max goes on these cruises, he never wants much do to with us. He enjoys the independence of being in the youth clubs, doing his own thing (mostly, playing Wii bowling, watching movies and making an occasional picture). Max does not much enjoy the hustle and bustle of dinners on the ship; he'd rather down mac 'n cheese in the teen club. And so, we didn't force him to be part of Ben's birthday celebration—there will be other opps for that this weekend. As for the movies, well, Max is obsessed with Incredibles 2 and proud of himself for having seen it alone several times know.

I think people also don't fully understand, without better knowing Max, just how important it is to encourage his independence. They see a boy with disabilities and think that, like a young child, he cannot be left to his own devices. And to be sure, at times Max needs assistance. But he also needs to be learn how to be independent.

I have been a parent for close to sixteen years now, and although raising Max has taught me not to judge other parents, I am still vulnerable to feeling judged. This is because I am a mother of the human variety raising children of the human variety who might act out in public or otherwise not behave according to societal standards. And this is OK. I can deal with the occasional pangs of "Am I doing this parenting thing right?" because overall, I am doing the best that I can

I suspect Julie might still be wondering whether we're going to lose one of our children, away from her watchful eye. I am glad she didn't see us walking off the ship yesterday morning. Max was wailing nonstop because he didn't want to leave. At one point, he stood there looking mournfully at the Disney Dream, refusing to move. And so, I said the only thing I knew would calm him down: "Tonight you and Daddy can google about going on another cruise!" 

Max: "For my birthday?!" (That's in two months.)

Me: "Er, um, er hey wait Dave, here are our passports!"

Max did calm down, placated by the fantasy of another cruise. And once again, I win Mom of the Year. Damn straight.

Tuesday, October 9, 2018

Hiking is where my child with autism and I can be free


This guest post is by Jane Kim, an immigration attorney, writer and mom of a child with autism. She lives in the Philadelphia suburbs.

My son and I are resting on a rock, looking out for pirates that could hijack our ship at any moment. Unexpected sounds—a chipmunk scurrying past, tree limbs cracking—could make our ship vulnerable, and we stand ready to defend. We are in the moment, and at peace. It feels so good.

Hiking with my son, who is six years old, has been an amazing experience for both of us. For one, being outside forces you to slow down—and tears children away from tech! Beneath the sky and the trees, there is no judgment. My son is free to be himself. The only expectation is to enjoy the journey.
Too much of my son’s precious early years were spent worrying about his development. Only a handful of things eased the anxiety, and being outdoors topped the list. When he was a baby, we’d take him hiking in Vermont in a backpack. Amidst the foliage and bright blue sky, his demeanor shifted from unsettled to observant. He was receptive and tuned in. It was amazing to watch.

It still is. Out in the forest this boy, whose interests don’t often mirror those of kids his age, becomes increasingly curious about his surroundings. I don’t feel as if I have to convince him to stay with me, as I sometimes do with board games or arts and crafts. When we hike, he rarely tires. Two miles? Easy. Mt. Pisgah in Vermont? Bring it! He's purposeful and swift, and I have to ask him to slow down. He helps me over fallen logs, slippery stepping stones and dilapidated bridge paths. He tells me I’ll be OK. And I believe him.

We spend time looking for white trail blaze markers to confirm we're not veering off course. Oh, how I wished for white blazes earlier in my son’s life—some sign to show that I’d made the right choices with changes in ABA programming, introducing a new therapist or therapy, deciding on medication, setting IEP goals. Instead, I stumbled around.

As my son has grown older, I’ve grown more confident in helping him carve out his path. I make the best decision with the information I have. I trust my gut. These days, white trail blazes come to me in other forms: a thoughtful text from a friend, kind words of understanding from a teacher, a squeeze of a hand from a loved one, or words of encouragement from a boss. They help me stay on course and get me where I need to go with confidence.

When I was growing up, we didn't spend a lot of time outside as a family. And when we did, it was for a specific purpose: raking leaves, playing badminton, running through the sprinkler. As a child, I can't remember a time being outside when the primary purpose was to explore, discover and just be. 

Fall is my absolute favorite time of year to hike. When my son and I need a break from the dizzying pace of life, when the familiar doubts creep in (i.e. “Am I doing enough?”), we head to the trails. The air is nice and crisp, and the leaves are in all of their splendor. There’s a lightness in my step. We are both coming out of the woods.


Monday, October 8, 2018

Disability discrimination so blatant, it's hard to believe it's true


Ashley Waxman, 20, sat in the office of the Party City manager for a job interview. It was October 10, 2017, and when she dropped off her application for a sales associate position at the Nashua, New Hampshire store, court documents say, she was asked to go to the back room to speak with the hiring manager, Evelyn Hojilo.

Wakman has autism, and was accompanied by her job coach, Julie Sousa, as also reported by Disability Scoop. The lawsuit she eventually filed against Party City claims that once the manager realized that Sousa wasn't Waxman's mother but a job coach, the tenor of the discussion changed, the documents note: "Ms. Hojilo told Ms. Sousa that Party City had hired people 'like that'—people with disabilities who needed job coaches—in the past and it had not gone well."

According to the lawsuit, Hojilo also commented that "people like Ms. Waxman were not good workers because they slept on the job and played with props in the store and would listen to music with headphones instead of working."

It's hard to believe that anyone would say this, period, let alone say it directly to a person with disabilities. Imagine if these sort of remarks were directed toward a black man or an Orthodox Jew and you'll get just how discriminatory they are. The lawsuit claims that "by failing to hire Ms. Waxman because of her disability and/or need for the reasonable accommodation of a job coach, Party City violated the ADA." The manager in question no longer works at the Party City store. I'd like to think she was terminated because of her behavior.

Even if an employer doesn't voice discriminatory words, I'll bet there are a fair number who think them. It's pretty depressing to consider that as the parent of a teen with disabilities. I can't even imagine how adults with disabilities feel when they have to contend with this.

Despite this reported ugly incident, I'd like to think that slowly but surely, minds and perspectives are changing. I was so thrilled to see a recent video by my friend Pam, who vlogs about her son with autism, Ben, in the series The Education of B.T. The recent video she put up showed him job training at a local pizza parlor.

Here's to hope, once again. 


You can watch more episodes of Autism and The Education of B.T. here

Friday, October 5, 2018

The Disability Blogger Weekend Link-up: join now!


What to do if you're new here

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: One good way to tell how a child was raised: How they treat those with disabilities

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, October 4, 2018

Dear Netflix: Using the r-word is not creative expression


Dear Netflix,

Recently, CEO Reed Hastings spoke out about the r-word. As in, he defended it despite the fact that it's a slur against people with intellectual disability.  So-called comedian Tom Segura says it in his Netflix special, Disgraceful, along with other derogatory comments. His idea of a joke: "Now you can't say that. Now you gotta be like, 'That's not smart. Your idea has an extra 21st chromosome.'"

This summer, Harvard Law School Professor Laurence Tribe wrote to Reed Hastings, asking him to take action. As he noted, "I cannot recall encountering anything more hateful or painful than the stigma Segura has weaponized in the name of comedy." Hastings' response to him, as shared on Disability Scoop: "Our view is that, even though many find Tom Segura's comments hurtful, in this instance they fall within the bounds of creative expression as part of a stand-up comedy performance. Certain portions of any creative work including stand-up comedy can and do offend and are intended to evoke a range of responses." He continued, "As an on-demand service, no one has to watch any particular show on Netflix."

Sure, we could refuse to watch any show on any TV channel because it's offensive. That's besides the point.

Fact: Hate speech is not creative expression. It's hate speech. Even when the r-word is not directed at a person with intellectual disability, and used in a joking way, it perpetuates old, damaging stereotypes. It slams an entire population, as slurs do.

Fact: A group of Special Olympics delegates, including S.O. athletes and disability self-advocates, met with Segura in June and asked him to remove the offensive material. Then the Special Olympics asked Netflix to. The special is still available, in its entirety, online.

Fact: If Reed Hastings had a child with intellectual disability, you can be sure he won't be sticking up for it.

Fact: A few months ago Hastings fired public relations PR chief Jonathan Friedland for using the n-word in a meeting as well as in a subsequent discussion about what happened, saying that it showed low "awareness and sensitivity." The exact same thing could be said of comedians—and anyone—hi who uses the r-word.

Fact: Hastings' memo noted that the n-word was created as an euphemism "to move people away from using the specific word." Again:, the same can be said of the r-word. (Irony: The meeting at which Friedland dropped the n-word was one about sensitive words.) It is not my goal to delineate from the weight of the n-word. What I'm saying is, we widely recognize the use of racial and ethnic slurs as an issue. So why is it OK to degrade the entire population of people with intellectual disability?

Netflix, I love a whole lot of your shows. But as the parent of a child with intellectual disability, it is disappointing, disheartening and downright despicable that you condone the use of hate speech. My son—a bright and determined young man—has enough challenges to overcome in life, many having to do with the limitations society imposes on him. Programming that belittles him is not comedy. It's cruelty.

It's not too late to recant. As Hastings himself said of the n-word incident, "I should have done more to use it as a learning moment for everyone at Netflix about how painful and ugly that word is."

There's still time to do that with the r-word, Netflix.

Wednesday, October 3, 2018

Kids with disabilities missing from religious services, finds a study. But you knew that.


Max was supposed to attend services at our temple recently, except he bailed. Our temple has a program partnering youth with disabilities with buddies, and he basically stood his buddy up. No amount of persuasion or cajoling would induce him to walk into the service.

Participating in religious services has been a long haul for our family. Some of you may recall that, years ago, I quit our temple after basically being told that if I wanted a program for Max, I’d have to start it myself. I just didn’t have the bandwidth. For a while, we temple-hopped. A few years later, a new rabbi was hired, a warm, caring, inclusion-oriented man. He listened to me. The temple started offering services for families with children who had special needs. Eventually, that evolved into the blended program that exists now.

I wasn’t alone in my struggle to find a place for Max at our temple, as I found out when I wrote about our journey and heard from other parents. Children with disabilities remain absent from houses of worship, as new research from Clemson University shows.

One in four children with developmental delays, learning disabilities, anxiety and conduct disorders never attends church. That number is one in three for children with autism, depression, speech problems and brain injury.

“I would like to think that this research could serve as a wake-up call to the religious communities in our nation,” said Andrew Whitehead, assistant professor of sociology, and a father of two children with autism who did the research. (Let us all say: AMEN.) “In many ways, this population is unseen because they never show up, or when they do, they have a negative experience and never return.”

While there are an increasing number of programs and options, we still have a long way to go. As much as it seems like welcoming people of all abilities to services should be a given at houses of worship, it still isn’t.

Max ended up hanging at the toddler service with Ben and Dave. He watched delightedly as Ben danced around. They listened to a woman playing fun songs on her guitar.  Years ago, the music in that room would have been too much for him, but he was happy to be there and I was happy for him. More traditional  services aren’t cutting it and he’ll find meaning in other ways. And that’s perfectly OK.

Tuesday, October 2, 2018

Those times when you think, I wish my dad could see this


Max is really into these Omega-3 supplements he's been getting since he was a baby called Coromega. The neurologist recommended them as a brain booster, and we'd mix half a packet into his oatmeal (they come in mousse form, we get the orange flavor). Lately, Max has been sucking that stuff directly out of the packets. He stood in the kitchen last night holding the bag of them and asking Dave to give him one. "It's healthy!" he announced.

I had one of those "If my dad could see him now" moments. They strike from time to time. Losing a parent when you're a parent is, at times, doubly sad—I miss my dad, who died in 2011, and also regret that he's missing out on my kids.

My dad was into healthy food before it was trendy. I grew up eating oat bran, wheat germ, homegrown sprouts and homemade yogurt. I thought it was all disgusting but, yep, Dad knew what he was talking about. In college and throughout my twenties, Dad sent me newspaper clippings about nutrition ripped out from The New York Times' Health section. I used to tease him by telling him I'd eaten Twinkies for dinner.

When I had Max, my dad was pretty grim about his future. He was a bit pessimistic by nature, but he was also very well read and knew what it meant for an infant to have a large bilateral stroke. Dad encouraged us, as the doctors did, to get Max as much therapy as possible. He thought it was a smart idea when Max's neurologist recommended we give baby Max MCT oils (medium chain triglyceride) oil, good for brain health. Eventually, both Dad and the neurologist recommended the Omega-3s. And here was Max, standing in the kitchen asking for them himself.

I think of my dad during everyday awesome moments, along with the milestone ones. I know he would have admired Sabrina's athletic abilities and cackled over Ben's bossiness ("I said NO!"). He would have adored Ben's naughty grin and Sabrina's auburn hair, and thought Max turned out to be such a handsome young man. He would have appreciated Max's sense of humor, his proficiency with the iPad and their mutual love of travel. He would have been awed by Max's development, a boy doing things doctors never thought he'd do.

And if Max starts telling me to eat more salad, well, Dad will certainly be grinning down at both of us.

Monday, October 1, 2018

One good way to tell how a child was raised: How they treat those with disabilities


Max was hanging out with some girls recently, part of a group Sabrina belongs to. He'd crashed their gathering at our home and was doing some drawing with them.

During a snack break, some of them ignored Max, who was trying to make conversation. But a couple hung out with him and listened to him talk about wanting to move to Orlando. One complimented the picture he'd made. They didn't talk with him in an infantile way, which sometimes happens. They spoke with him like a peer.

Parents know to teach children to be polite and to do right. But many don't think to teach theirs to be open-minded about, and accepting of, people of all abilities. It's not a hard thing to do. Even if there are no kids with disabilities in a child's academic or social circle, there are opportunities to start discussions—when a child has questions about a child or adult with disabilities they see in public, say, or in the media. There are blogs (hello) and social media. There are children and adults with disabilities on TV, from Speechless to the reality show Born This Way. People with disabilities are all around, if others choose to see them.

My own parents were awesome parents, but they did not talk with me about people with disabilities. There was so much less awareness back then. I didn't know what to make of the one child I ever met who had cognitive disabilities. And when I grew up and saw people with disabilities or parents of kids with disabilities, I only felt sorry for them. Then I had a child with disabilities.

I didn't judge the girls who ignored Max or their parents—they're good people—even though it was hard to see them not engage with him. It's possible that the girls who naturally interacted with him had someone with disabilities in their extended family, so hanging with Max was NBD. Still, I could tell that their families had instilled in them to treat all people respectfully and equally. I've seen it happen enough over the years to know. While a lot of kids or teens in a room may gawk or stare at Max—and there are times when parents stare, too—there are always a couple who approach Max as a person, not a disability.

And once again, here I am, just a mom saying: Teach your children well. Tell them not to feel sorry for children and adults with disabilities. Help kids understand there are all sorts of ways that people move, communicate, behave, express themselves. Play up what everyone has in common. Teach them respect with your own actions. Encourage them to just say "Hi."

Friday, September 28, 2018

The Disability Blogger Weekend Link-up: Rock the post


What to do if you're new here

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: I don't want him to hate his disability, but that's his choice

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, September 27, 2018

I don't want him to hate his disability, but that's his choice


"He told me he hates cerebral palsy," I said to the pediatric neurologist. "Max, do you have anything you'd like to add?"

"NO!" said Max.

We were at our annual visit, and Max wasn't excited about it. "I'm not sick!" he reminded me as we headed over. He was happy to let the doctor know he planned to move to Orlando, and even showed him the big house he'd like to live in with Dave and Ben. (Sabrina and I are not part of is moving plans.) Then Max said a word and I had no idea what he was saying. He kept repeating it.

"Max, use your iPad!" I said.

He wouldn't.

"Max, type out the word on my phone," I said, holding it out to him.

Nope.

I told the doctor that these communication stand-offs happened frequently—Dave or I wouldn't know what Max was telling us, and he'd refuse to type it out.

Max kept saying the word, growing increasingly frustrated.

Doctor C. started talking: "He is in the process of identity formation, and at the point where he is trying to figure out how he is like and not like other people, and it's possible he thinks that using the iPad so people understand him makes him feel lower than his siblings," he explained. "It's a power struggle, and he doesn't want to give in and use it. He wants to feel more powerful than his condition."

Ah. That made sense. "Max has to understand that like all of us, he has his deficits, and he has to be smart and work around them or be stubborn and be stuck," the doctor said. That made even more sense. Suddenly, I was seeing Max's refusal to communicate through an app in a whole new light.

"Max heeds help understanding that he can use the iPad for power," Dr. C. continued. One thing he suggested: Create a "pissed off" page. Now, encouraging your teen to let you know just how annoyed they are with you is not something most parents want, but it seemed like exactly what he needed.

So this weekend we'll be working phrases like "You're annoying me!" and "Leave me alone!" into his TouchChat app, along with any other choice sentiments he'd like. (I am going to draw the line at "Eff you, Mom!") The doctor also suggested we could try a tech day at home in which we all communicated using our devices, so Max could feel equalized.

Max just wants to fit in, as teens tend to want to do. But when I hear that he hates CP, it's painful ttpto hear. Nobody wants to see their child struggling. Plus, I don't see Max as being so different from his siblings. Yes, he has more physical challenges and doesn't speak quite like they do, but every one of them has their special needs.

I've come a long way in my journey as the parent of a child with disabilities, passing many emotional landmarks along the way: grief, hopelessness, despair, anxiety, fear and frustration. I have gotten to the point where I see the CP as one part of who Max is, not all of him. But Max's journey is his own, and I have to accept that there are times when he will feel negatively towards his disability. As one adult with disabilities commented on a recent post, "We get tired of all the appointments, pain, surgeries and missed chances, even as we recognize that who we are is often intrinsically tied to our condition."

At the end of our appointment, I mentioned that in October we're going on a Disney Cruise. Max noted that we were going to have some Halloween fun on it. Again, Max said the unintelligible word, but this time he said it in a new context and I got it. He was saying, "It's my favorite holiday!" When he'd been saying the word before, he'd been noting that Sabrina and I could come visit him there during holidays.

And so, my journey continues. I have to figure out how to best support Max at the times when he struggles with the realities of his disability, or downright hates it. I have to help him see that we all have our challenges and that we can work around them. And Max's journey continues, too.

Wednesday, September 26, 2018

What's on your child gratitude list?


When Max was a little guy and I'd get anxious about his development, as parents of kids with disabilities tend to do, I used to jot down stuff about him for which I was grateful—what was uniquely awesome about him, stuff he enjoyed, progress he'd made. It helped shift my brain out of worrying about the future, if only for a while. Here's my short list these days, plus a blank one to cut and paste into the comments section and share your responses, if you'd like.

One word I'd use to describe my child is: Sunny
One of my child's greatest abilities is: His sense of direction—there are times when he knows better than I do which way to turn, no app required
One recent awesome accomplishment is: Writing his own blog post
And another recent accomplishment is: Ordering for himself at restaurants
His happy place at home is: Home Depot (to furnish his fantasy Orlando house)
His happy place away is: Disney World
One thing that makes him proud of himself is: Getting into the car on his own and shutting the door—he flashes me the biggest grin every single time
I never imagined that someday he'd... Have complete conversations with me.
One of the most memorable things he's ever said/communicated is: The first time he said my name, "Ohmmy."
One thing he does that always makes me smile is: When his little bro is acting naughty, Max will lean over to him so they're at eye level and say "No, Ben!"

And here's a fill-in-the-blanks list for you:

One word I'd use to describe my child is: 
One of my child's greatest abilities is:
One recent awesome accomplishment is:
And another recent accomplishment is:
His happy place at home is:
His happy place away is: 

One thing that makes him so proud of himself is:  
I never imagined that someday he'd...
One of the most memorable things he's ever said/communicated is:
One thing he does that makes me smile is:

Tuesday, September 25, 2018

My new house in Orlando, Florida: by Max


This post is from Max, who typed it by himself. 

I want to move to Orlando, Florida.
I Want to go Disney World in Orlando Florida
Monday Magic Kingdom I Want to go on Rides I will See a Happily Ever After Fireworks
Tuesday I want to go to Epcot Center I want to go to test track
Wednesday I Want to go to Sea World I will See a Dolphin Show
I will go Swimming with Dolphin at Sea world
Thursday I want to go to Universal Studios i will See a Despicable Me
Friday I want to go to Hollywood Studios I will See a Frozen Show
Saturday I will go to Swimming Pool at Holiday inn
I will come back to New big house in Orlando Florida.

Monday, September 24, 2018

He's got what he needs to succeed


When Max gets it into his head that he wants to do something, he won't let up. This doesn't work out so well with things like his plan to move to Orlando, even though he reminds us daily and tries to persuade us by noting that our neighborhood/city/state are "disgusting." But this trait does come in very handy for working around his challenges.

It was sheer determination that lead Max to commando crawl like an army soldier around our home when he was a tot, because his arms and legs weren't yet strong enough for him to crawl on all fours. I was thinking of this yesterday as I watched him at the beanbag toss during his school's annual picnic. Max loves this game, although aiming doesn't come easy to him. No matter. He literally tried dozens of times to get the bean bag into the hole as another parent stood nearby and handed them to him.

Maybe people who don't know Max well would mistake his disability for inability. And for sure, there are things that do not lie within his powers—same as us all. Right now, he's still learning to work around them.

Last night, we had one of our random conversations about cerebral palsy. Max asked why he had to visit the a doctor this week, if he's not sick, and I explained that the neurologist we visit once a year sees a lot of kids and teens with cerebral palsy. At which point Max asked if Sabrina had cerebral palsy or Ben did. "No," I responded. Then he said "I hate cerebral palsy!"

My heart sank, although I didn't know if that was just another flash of teen 'tude, given that likes to say "I hate ___" about various stuff (where we live i.e. not Orlando, vitamins, fireworks, me).

"Why do you hate cerebral palsy, Max?" I asked.

He said, "I don't know."

"Max, a lot of people have cerebral palsy," I said. "It's part of who you are."

[Silence.]

He didn't want to talk about it more, so I filed it under "To be continued," as these conversations always are. At bedtime, we watched videos I'd taken of him at the bean bag toss, and he gave me one of his proud grins.

I hope that as Max matures, his understanding of what it means to have CP continues to grow. I hope he embraces it and sees it for what it is: one part of who he is. I hope that I can also help him understand that every one of us has challenges to overcome, along with our gifts, talents and strengths. But I do know that he already realizes that when he sets his mind to something, he often can succeed—and for that, I'm seriously grateful.

 

Friday, September 21, 2018

Share a fave post on The Disability Blogger Weekend Link-up


What to do if you're new here

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: Hey, special needs moms, you're worth $828,836 a year

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, September 20, 2018

Hey, special needs moms, you're worth $828,836 a year


You're not likely to find "Special Needs Mom" listed on LinkedIn, but when it comes down to it, we moms do a whole lot of jobs really, really well. What, exactly, would a special need's mom salary be if she were paid for the work she does? People were musing that question over on my friend Brenda's Facebook page the other day. Someone said $150,000, but then others decided it could be double that, especially for moms who are home full-time. The reality is almost three times that amount.

Here's a look at the wide variety of jobs we do daily, with average annual salaries:

Communications director: $72,558
Patient advocate: $40,496
Education advocate: $48,529
Medical coordinator: $33,015
Nurse: $67,490
Medical insurance claims processor: $37,563
Feeding/swallowing specialist: $61,000
Home health care aide: $24,040
Social director: $54,518
Physical therapist assistant: $56,580
Occupational therapist assistant: $60,341
Speech therapist assistant: $57,884
Music therapist: $50,808
Behavior management specialist: $40,326

PLUS! The annual salaries for the standard jobs we moms do:
Muber (Mom+Uber): $30,000
Housekeeper: $26,133
Short-order cook: $27,450
Organizer: $40,105

And I'm not even counting grocery bagger, personal shopper and bath attendant. And really, could you even quantify boo-boo kisser, crayon guider and arbiter of making sure everyone gets the same sized slice? Nope.

The grand total of the salary we'd receive: $828,836

If only!

Job conditions can vary, depending on how clean the house is, whether laundry's piled up everywhere, whether we are well stocked with caffeinated beverages and whatever moods our children are in. The benefits are pretty good, especially when we see that our kids are making progress, thriving and generally happy. And I'd say we moms do a kick-butt job every single day—no slackers here. Bonuses may come in the form of hugs or kisses but, hey, that's priceless. And when you get right down to it, so are we.

Here's a little reminder to print out and tack onto your fridge for the next time you're overwhelmed, frazzled or just plain over it.




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