Thursday, January 31, 2019

Microsoft's Superbowl ad 2019: When kids of all abilities play together, everybody wins

Microsoft is back with yet another great commercial about inclusive play. Their December ad for the Xbox Adaptive Controller featured a boy with Escobar syndrome, Owen Simmons, whose friends race over to his house to join him in a game milestones. Owen's back in Microsoft's Superbowl Ad 2019, We All Win, along with a bunch of kids of all abilities and a couple of parents. They include the awesome Jordan Reeves and her mom Jen of Born Just Right.

Here's the extended version of the Microsoft Superbowl Ad 2019 (a 60-second version will air during the Superbowl). And here's hoping a bazillion people get the message that our children, just like any other children, have the inalienable right to freedom of play—and to be included.

Meet the first superhero with cerebral palsy

Farida Bedwei, an IT entrepreneur with cerebral palsy who lives in Ghana, had no heroes with disabilities to look up to back when she was a comic-loving kid. So she created Karmzah, a comic about a superhero with CP. By day, Morowa Adjei is an archaeologist—but her walking aids transform her into Karmzah, who has the power to fight the bad guys, flip 'em over and run and fly, too.

Karmzah launched last October, on World Cerebral Palsy Day. I missed the debut but my web pal Lauren shared about it yesterday. Besides inspiring and encouraging children with with CP, Farida also hopes to make the condition seem normal. Which, of course, it is—there is a wide range of abilities in this world, and CP is part of that spectrum.

Karmzah joins a select group of superheroes with disabilities that include Professor X of the X-men, who uses a wheelchair; Hawkeye of The Avengers, who is deaf; and Daredevil, who is blind. Karmzah can be seen on the Afrocomix App on Google Play. I haven't been able to watch because I'm not on Android, so if you can see it, tell us about it! Listen to Farida explain:

Image of Karmzah: Farida Bedwei

Wednesday, January 30, 2019

Could Richard Branson help my son find a job someday? His video is a start

"He's so cheerful with everyone!" the teacher said when I picked Max up from a school program the other day. Yep, that's my Max, the human form of sunshine, Prozac and all things happy. On the drive home, I once again started wondering what kind of job might someday be a fit for that upbeat attitude of his. He's just 16 and while I have hope that there will be more work possibilities for him by the time he enters the workforce, I'm worried.

Yesterday, I felt heartened as I read about Irish disability activist Caroline Casey and The Valuable 500—a campaign she just launched to get 500 global businesses to commit to putting disability on their board agendas this year, committing to both accountability and action. Stats show that disability is still absent in discussions by execs...and absent in the workforce. In the U.S., 21 percent of people with disabilities have jobs, compared to 68 of people without disabilities, per the Department of Labor.

"The 1 billion people globally who are disabled and can't find work need top leaders to take action—now," said Casey, who is blind. 

Microsoft, Unilever and Barclays have come onboard The Valuable 500. Virgin mogul Richard Branson stepped up his commitment with a video. "I see the value in creating a world that caters to the needs of the whole spectrum of humanity," he says. "Disability can no longer be a conversation reserved for charities and health organizations—businesses and business leaders have a vital role to play in transforming the lives of disabled people."

It's great that Richard Branson, one of the most most popular businesspeople of all time, is behind the campaign—people are going to listen up. Yet words and encouragement alone won't cut it. Too often, companies pay lip service to inclusion, and stop at that. In fact, Casey's called b.s. in a series of spot-on mini mockumentaries titled DIVERSish, like this one.

I'd love to see videos that showcase how major companies have included people with disabilities. I'd like to hear execs openly discuss the biases they've had to overcome—and how PWD proved them wrong. In fact, a recent report from Accenture found that companies that embrace best practices for employing and supporting more persons with disabilities in their workforce had revenues that were 28 percent higher, among other benefits. (Props, Microsoft, Bank of America and CVS).

Of course, I'd also like to hear more people with disabilities talk about the work they've found and how it happened. But business execs need to face up to the fact that they have failed PWD—and own how they are going to change that.

Oh, yes, this parent wants more, more, more. I am acutely aware of the roadblocks Max faces in life. I know all too well how hard is to shift mindsets and attitudes. Campaigns like this fuel my dreams for a world with more inclusive, barrier-free businesses for Max and other people with disabilities. I can only hope it's no fantasy.

Tuesday, January 29, 2019

So then he opened the car door OMG OMG OMG

Working on tasks involving fine-motor-skills tends to take Max a while, because his fingers don't move the way he wants them to. Grasping a spoon involved months and months of effort when he learned how years ago. Holding a pencil and a toothbrush are still a challenge, not uncommon among people with spastic cerebral palsy. Max often manages to make due, clinging to stuff with all his might. At times, of course, he gets frustrated. He also knows we'll do stuff for him, which can impact his motivation.

But Max likes to make people happy. Since becoming a teen, he also likes to be right. And so, when I asked his OT a few weeks ago to sit in the car with him and work with him on opening the car door, I had a feeling Max would pull it off. I had no expectations for how long that would take. It didn't matter, really; there is no rush, or finish line. As I often say, Max is on his own timeline and nobody else's.

The OT tried one week, and said Max would get there—he just needed to be reminded to use several fingers to pull the car door lever. The next week, the OT was sick. And then, I was at work last week and this video showed up and I did a happy dance in my seat.

MAX!!! Yet another one of those small-yet-major moments, and yet another step toward independence.

Over the weekend, Max let himself out of the car a couple of times, grinning the biggest grin. A few times, he tilted his head to the side and said "Ugggh!" (his version of the eye roll, which he hasn't yet mastered and I hope he won't because one eye-rolling teen in the house is enough), then insisted that we do it for him.

But it looks like this is going to stick.

Monday, January 28, 2019

This is fourteen

Fourteen is...
...THE best big sister
...THE best little sister
...a great friend to many
...she-shoots-she-scores captain of the basketball team, determined on the cross-country track, fierce on the lacrosse field
...taller than your mom
...assuming you know better than your mom (I'm not even gonna argue with you)
...curious about the world
...sometimes sweet
...sometimes sarcastic
...doing volunteer work not just because you should but because you care, shopping, shopping (did I mention shopping)?
...genuinely responsible about doing homework
...professional morning dawdler
...crazy for sushi
...prone to busting out dance moves just because
...just as stubborn as I can be, and that's saying a lot
...actually cleaning up your room because, you said, "it relaxes you" (OMGEEEEE)
...staying up way too late
...facial mask maniac
...chilling in the saucer chair in your room and reading
...critiquing your mom's wardrobe, weight and basically everything but I love you no matter what
...master of the selfies
...redecorating your room and moving the most giant desk by yourself and how exactly did you do that?!
...pushing limits
...pushing more limits
...pushing All The Limits
...a perfectionist about school projects
...more skilled with a flat-iron than I'll ever be
...still cute enough to love Shirley Temples
...still freckled
...still my best girl.

Fourteen is you today. Happy Birthday, Sabrina. We love you.

Friday, January 25, 2019

You're invited to The Disability Blogger Weekend Link-up

What to do if you're new  

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

Like this: We all make igloos for our children

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, January 24, 2019

It is hard to stop over-parenting your child with disabilities

Max is counting down the days till he sleeps over at his school this weekend. Tuesday, after I got home from work, I packed up all his stuff so I could send it in with him on Wednesday, as the teacher in charge requested, and left the bag sitting by our front door. I was on the train to work Wednesday morning when I remembered that I hadn't told our sitter that it needed to go on the bus with Max. The mom guilt demon started stabbing at my soul.

"By any chance, did Max tell you he had to take that big blue bag to school?" I texted her. 

"That was the first thing he told me when he walked in," she responded. "He couldn't hold back his excitement."

Ah. That's when it occurred to me: Why hadn't I told Max to remember to take it to school? Because I was on autopilot and did what I've done for most of his life: I took care of things for him. Except this time I messed up and didn't, and Max handled it just fine on his own.

Letting Max be responsible for his needs is something I have to work at. After all, I expect his younger sister to be responsible for stuff in her life. A few times in the past couple of months Sabrina has forgotten her basketball jersey or her basketball shoes, despite the fact we've told her to get her stuff together the night before, and I've grumbled about Dave or me having to drive things over to school. I finally said that if it happened again nobody would be bringing her stuff.

Max has plenty of responsibility in him. He makes sure to do his homework and if it's Sunday evening and he hasn't yet gotten to it, he reminds us. Max looks out for Ben, cautioning him when he's about to do something he shouldn't (like climbing on our kitchen table so he can reach the sink f and squirt water everywhere with the pull-down faucet). He recently took control of our morning Sabrina-you've-gotta-wake-up drama. A couple of times, Max has reminded an evening sitter that he needs to take his anti-seizure meds. 

One truth about raising children with disabilities is that even as they make progress, sometimes you as a parent don't. Maybe you're too used to handling things, why I took it upon myself to make sure Max's bag got to school. Or maybe, deep down, we are scared to let go—vestiges of a time when doing everything for our children gave us a sense of control that helped offset the fact they were missing typical developmental milestones.

I'm still doing as much as I can for Max. But he's not that helpless baby anymore, and I need to conscientiously treat him like the teen that he is. Besides, it'll be nice to let go of some to-dos. 

Wednesday, January 23, 2019

That time I didn't pay $1165 for medication

File this one under: Fun. With. Insurance! We switched insurance companies at the start of the year, and I recently had to get more scopolamine patches for Max. Worn behind an ear, they're typically used for sea sickness; one side effect is that they dry up your mouth, so they help with saliva control for people with cerebral palsy. Our company offers us a care coordination company to help navigate insurance and health issues, so I asked a rep to look into the cost. The response I got: $1165 for a three-month supply. Which used to cost me $80.

Wha? Was she sure? That was for the generic?

Yep. She'd called once more to check, and yes, for the generic.

After I pointed out that something was really, really wrong, I learned about GoodRx, a company that saves people money on prescriptions. Do they ever: If I signed up for their Gold Plan, a three-month supply of patches would cost $117.31 plus $10 per month for a membership (the first month is free). The only downside was that the money wouldn't go toward our deductible but because I wasn't sure we'd hit that—and because there was no way I was going to shell out $1165 for a three-month supply to anyone—it seemed like the best option. 

And then: the extremely dedicated rep called our insurance company yet again and found out that the actual true real not kidding cost would be $330—$835 less than what we'd originally been told. Her guess was that the reps had run the information through the system before Max was eligible for a refill and hadn't thought to point that out. Oopsie! I still decided to go with the GoodRx option.

The morals of the story:

• If a prescription seems way too expensive, there actually could be a mistake.
• Can I tell you how many times insurance staffers have made mistakes over the years? No, I can't, because there are too many to count.
• Don't trust the reps who pick up the phone when important cost or provider information is involved; ask to speak with a supervisor.
• Insurance companies are not good for your blood pressure.

That is all.

Also check out:
Getting insurance companies to pay for children's therapies: 9 hacks

Tuesday, January 22, 2019

We all make igloos for our children

I saw the viral photos over the weekend of that cool wheelchair-accessible snow fort built by two parents in Cincinatti, Ohio. Gregg and Sarah Eichhorn have nine children with disabilities and medical needs, all adopted. When snow fell the other weekend, Gregg and his brood discussed making it accessible to Elijah, 11, and Zarah, 19, who use wheelchairs. The parents went to work packing snow with some help from their kids and five hours later, they had an adaptive fort. That's them above with Zarah. 

It is not every day that someone builds a gigantic snow fort like this for their kids, so props to the Eichhorns for that. My best snow-building feat to date has been posing a snowman to look like he was taking a selfie with Sabrina's phone. But America seemed to think it was mind-boggling amazing that the couple made the fort accessible for their children. Thing is, that's what parents of children with disabilities do every single day: we carve out ways for them to enjoy what their peers do. "I keep telling everybody, it's really no big deal," Gregg Eichhorn told People.

We don't do this stuff because we are heroes, but because we are parents, these are our children and they deserve equal access to childhood and adolescence. And so we wrap modeling clay around a crayon so our child can better grasp it, put the noise-blocking headphones on so a performance won't unsettle them, build Halloween costumes that include their wheelchairs, load knock-knock jokes and fart sounds onto their iPad speech apps, sit behind them on the merry-go-round for support. When people aren't willing to include our children in activities and programs, we push to get them in.

We try our best to figure out a way. And when others are awed by the lengths that we go to, they may be overlooking or not understanding the reason why. Our children might have challenges that their peers don't but in the end, they are still children and teens who want to enjoy life, just like any children and teens. Repeat: just like any children and teens. 

I'm just not sure that's what people get from viral videos like this. They see parents or other people accommodating and delighting young people with disabilities (I'm thinking of that video of a 10-year-old boy in a wheelchair swing) and that "awwww" reflex kicks in. It's "heartwarming," the news reports proclaim, exactly why the masses love these videos. But our children and teens are not creatures who are being coddled or treated with astounding amounts of TLC—they have a basic human right to be included in snowfall fun and all that life has to offer.

We parents will keep right on making those igloos and forging paths and building bridges and climbing mountains for our children. And it would be so great if people got the reason why.

Image: Gregg Eichhorn 

Friday, January 18, 2019

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: What to say when a stranger blesses your child 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, January 17, 2019

The skills people with Down syndrome achieve at every age

A new study offers a timetable of how individuals with Down syndrome make progress into adulthood, along with hope and help for parents and people with DS. The research, based on responses from 2,658 parents who have sons and daughters with Down syndrome of all ages, was recently published in the American Journal of Medical Genetics. Researchers assessed 11 skills, and found that people with Down syndrome kept right on achieving at every age:

By two years old, the majority of children with Down syndrome in the United States can eat reasonably well, and nearly 97% do by adulthood. By 31 years old, about 45% prepare their own meals.
By 25 months of age, the majority of children with DS walk.
By 4.7 years old, 25% speak; by 12 years old, the majority talk reasonably well. By age 31, 77% do.
By 8 years old, 25% read and by 21 to 30 years old, close to half do.
By 11 years old, 25% write; by 31 years old, 46 percent do.
By 13 years old, half maintain their own grooming and hygiene and by 31 years old, 79% do.
By 21 to 30 years old, 65% work independently, and by 31 years old, 71% do.
By 31 years old, approximately 34 percent live independently—and 30 percent travel independently.
By 31 years old, about 25 percent of adults in the United States with Down syndrome are dating. 

Of course, every child with Down syndrome and other disabilities proceeds on his or her own timeline, no matter what the averages show. But these findings can be heartening to parents of children with DS—and helpful for the progress, too. "Once a child with Down syndrome is born, parents frequently want to know how well their son or daughter is developing," says Brian Skotko, MD, MPP, a senior author of the study and director of the Down Syndrome Program at Massachusetts General Hospital. "Now we have guideposts—based on the responses of thousands of parents—that can help clinicians know when children may be falling behind their peers with Down syndrome and if necessary, refer parents to additional supports, resources and therapies."

The study is also an eye-opener for others: "Contrary to some public beliefs, people with Down syndrome never stop learning," says Dr. Skotko. "Functional skills can can still be attained and improved well into adulthood."

Wednesday, January 16, 2019

Hola and other words I had no idea we'd hear

I've happily shared videos over the years of Max in music therapy, like this one of him belting out Let It Go. While he has sang some words before he's ever spoken them—speech progress is one benefit of music therapy—he has also just flat-out enjoyed expressing himself this way, as music enables people to do.

Max has been with his current music therapist for several years now, and Amanda's awesome about tapping into his interests. Over the last few months, the two of them have written songs about Max's desire to move to Orlando. After our trip to the Dominican Republic, they came up with this doozie:

In the Dominican Republic we said "Hola!"
Te amo Dominican Republic
Mi amigo is Ethan
Mac con queso es mucho bueno
Ice-cream es mucho bueno

I came home from work the other night, watched the video on his iPad and had all the feels. This boy, the one whom I used to pray would say "Mommy" and "Daddy," is now using Spanish words. Before we'd left the Dominican Republic, he'd been saying "hola!" to everyone and here he was, mucho-bueno-ing.

Learning a second language hasn't been on our wish list, not because we haven't thought Max was capable but because speaking and understanding English has been enough to focus on. Amanda noted that Spanish is a great language for Max, since so many words ends in vowels; Max is good with enunciating vowels, less so with consonants.

Once again I will say: You just never know what the future will bring. Incréible!

Tuesday, January 15, 2019

What to say when a stranger blesses your child with disabilities

It happened again the other weekend, when we went into New York City. Our family was standing at a crowded intersection on 5th Avenue, about to cross the street, when a woman stared at Max and said "Bless you." He didn't notice, and I didn't respond—in my mind, Max does not need blessings or prayers any more than any person walking down the street does. Then she said, louder, "Bless you!" And then, yet louder, "BLESS YOU!" And I said, "Yes! I am so blessed to have these three amazing children!" and we walked on.

This has happened more times than I can remember with Max—strangers on the street, in stores, at airports or wherever blessing him or offering to pray for him. Obviously, people mean well, although this woman's insistence made me uncomfortable. Perhaps they are announcing their intentions, instead of just beaming prayers Max's way, because they want him, me or both of us to know they are lifting him up.

The phenomenon is common in the disability community. I've frequently read adults with disabilities discussing it in social media. Parents of children with disabilities say it happens all the time, and some shared stories when I posted about this on the blog Facebook page. "I've been cornered by a Jehovah Witness wanting to pray over my son as I was waiting for my order at KFC," said Brian H. "She was offended when I said, 'No, God made him and he doesn't make mistakes.'"

It's a touchy topic—blessings are involved, after all. Blessings! What could be bad? I know that some consider it graceless and just plain mind-boggling that parents like me do not appreciate them. But here's where I'm coming from: What is at the root of why strangers bless Max? I can't know for sure but when blessings and prayers are solely directed at him while my other two children stand there (as always happens), or when they are accompanied by pitiful looks (typical), I am going to make the natural assumption that strangers are praying on my boy because they feel he is unfortunate for having a disability.

The blessing pusher on 5th Avenue didn't bless my other two children. I can't think of a time when I've been out with one or both of them and someone has said "bless you" to either or offered to pray for them (or me, and God knows that as the mom of a teen girl, I could use good vibes). I've thought about how I would feel if I was out and about and someone randomly blessed me. Given that I don't think anything is wrong with me, I'd be all "And why are you blessing me?" Which is what people with disabilities object to—they see nothing "wrong" with themselves. Why should they be called out this way?

This woman's insistence on blessing Max made me a bit defensive in my response, although it was heartfelt—all my children are blessings. At other times, I've just smiled and said, "Thank you but he doesn't need blessings, he is awesome as is!" My Facebook friend Teresa B. always says this when people bless her daughter with disabilities: "God already blessed her!" Says Cat V., "I have to say that I have had numerous people say they want to pray for me so my deafness is cured. I always respond with, 'Please don't, I  LIKE how I am.'"

To be sure, not all parents mind blessings from strangers. Some feel a simple "thank you" is the best response. "People want to bless my kid or pray for him, go for it," says Cat V. "Hugging, just no.... Makes them happy. My kid needs all the good vibes he can get."

Some parents see unsolicited blessings as relative—they consider them far better than other things strangers do. "We have had people say some really crappy things to us about my daughter, who is mostly nonverbal and makes noises when we are out," says Sara C. "So when someone comes up to us and says something nice, even if it's weird, I usually don't care much. I don't understand why random strangers think it's OK to come up to parents of special needs kids and say stuff.... Special needs parents don't routinely go up to parents of neurotypical kids and make remarks."

All this is said in the spirit of a parent trying to raise a child who feels good about who he is, and in the spirit of helping people better understand that Max and any child, teen and adult with disabilities deserve to be treated with the same respect and dignity any person has. My Max doesn't think anything is "wrong" with him. Same goes for his little bro, but if he keeps seeing people offering Max blessings, he's going to wonder.

Consider what I'd say to Max when he someday realizes what's happening and asks what's up. Am I supposed to make him understand that strangers pray on him because of his disabilities? How different and apart would this realization make him feel? Yes, it could lead to a great discussion about disability and perception, if not many. But we are not there yet—him or our culture. And as his mom, I do not want him to feel like he is a person in need of pity.

People intent on doing my son good might instead compliment him on something he's wearing. Or his hair, he has really good hair. Or comment on the weather. Or say any of the typical things you might say to a stranger. Or just smile and keep your blessing on the inside. Make him feel like he is any person on the street; not calling him out for his disabilities is far more of a blessing.

"Why can't people understand that this behavior is incredibly insulting?!!?" says Marcy N., an adult with disabilities. "I usually try asking them why they want to pray for or bless me, in an attempt to make them think."

The best ambassador of all for Max is, ultimately, Max. The next time this happens, and it will, I am going to encourage him to say "I'm fine, thank you!"

Monday, January 14, 2019

For better, for worse, for scarier, for wearier, for happier, for....

Today is our eighteenth wedding anniversary. In Hebrew, the letters for the word "life" add up to "18." So I figure this is a year to celebrate our life as a couple. We have shared and savored the "better" part of our vows—our children, our first house, family gatherings, good friends, a caring community, fun vacations, work promotions, graduations, a bar (Max) and a bat (Sabrina) mitzvah, our children's inchstones, milestones, successes and accomplishments and so much more. We have weathered "worse"—finding out our firstborn had a stroke, the passing of loved ones, health scares, operations, layoffs, natural disasters, political nightmares.

We have been together...

For sadder
 For scarier
  For calmer
   For moodier
    For gloomier
   For brighter
  For surer
   For bossier
     For grouchier
      For cheerier
       For flakier
        For stubborner
       For closer
      For needier
       For wearier
        For tearier
         For smarter
          For pickier
           For testier
          For plumper
         For slimmer
         For madder
        For kinder
       For sillier
        For lazier
          For bolder
           For sunnier
             For funnier
              For saner
               For braver

And especially for stronger.

Here's to us, honey, and for being perpetually luckier to have each other.

Friday, January 11, 2019

The Disability Blogger Weekend Link-up: post, read, repeat

What to do if you're new  

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

Like this: The best thing anyone's ever called my child 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, January 10, 2019

One of the best things anyone's called my child with disabilities

What do you call a child with disabilities? For years, I used the term "special needs." As Max got older and I began hearing from adults in the disability community, I realized the euphemism wasn't doing him any favors. Owning the word "disability" could help Max embrace his cerebral palsy and not feel like there was anything "wrong" with him.

Having a child with disabilities can be hard for parents to accept, one reason it may be tempting to use "special needs." Parents of children with minor challenges may feel that "disability is "too strong." Yet a study published in the journal of Cognitive Research: Principles and Implications found that "special needs" had a more negative connotation than "disability."

I have been trying to only use the term "disabilities" and "cerebral palsy," especially around Max. I also like another way people have described Max: as "a character." It first happened several years ago, when Max was into wearing a red plastic firefighter hat at all times that said "Fireman Max." I was reminded of it over the weekend, when we went out to to dinner. Sabrina had been acting up that day and was somewhat surly when we sat down. After we ordered, three police officers walked in and took a table. A few minutes later Max got up, walked over to them and tapped one of them on the shoulder. "She's bad!" he said, pointing to Sabrina.

The police officer looked at me. Sabrina cracked up, because she knew exactly what Max was saying. "He's telling you she's bad," I translated. The officers laughed. When I shared on Facebook, someone said, "He is such a character!" And it's true—that's  Max's sense of humor and quirks, in a nutshell.

Max doesn't yet have a defined way of referring to himself. That will come. For now, I will keep on saying he has disabilities. But I also just love calling him a character. I'd like to think he inherited it from me.

Wednesday, January 9, 2019

I'm outsourcing parenting to Max

We have an ongoing issue in our family, and it is called "getting everyone out the door." Every single time, especially in the mornings, it's like we have never done it before. Oops! Forgot my basketball jersey. Honey, did you know where backpack with the diapers is? OK, go to the bathroom. Yes, I'll grab a snack. Fine, not that one. Etc etc etc.

Sabrina is particularly challenged with morning departures, as she herself will admit. This causes a fair amount of stress in our household, especially during times when Dave is traveling and she absolutely has to make her bus because I absolutely have to catch the train to work. It's resulted in morning tears and shouting, and makes an already-busy time of day downright awful. Despite having all her stuff ready the night before (usually) (mostly) (though sometimes not), she inevitably has to change her outfit or brush her hair one more time because: teen. And because, like many teens, she likes to dawdle. Getting her up out of bed is a whole other issue; even blasting Barry Manilow hasn't worked.

Max hates drama—well, other than the kind he causes. And so when Sabrina and I have stand-offs about lateness, he gets stressed. Finally, when Dave was away recently, Max decided to take matters into his own hands. First, he walked into her room and announced "Sabrina, get up NOW!" and then, as she got ready, he kept checking in on her and saying "Sabrina, you have to leave soon!" Because she didn't want to upset Max, she kinda-sorta listened to him and got ready more quickly than usual. I seriously loved it, not just because I didn't have to deal but because anything that helps Max feel empowered is a Good Thing.

Max has been acting more mature lately. He recently convinced Sabrina to see a movie with him. Max has basically watched over Ben since he was born. Because Ben is three and very bossy lately ("YOU HELP ME GUILD A LEGO TOWER NOW!!!), he's been giving Max some 'tude. Last night, when Max came into his room at bedtime and asked for a kiss as we were reading, Ben said "No, I'm busy right now." Max just laughed it off.

There are definitely times in the last couple of years where my older kids have been the parent. Max is awesome at reminding me about upcoming events, the need for me to fill out paperwork and where my phone is located. Last night, Sabrina informed me it was the last day to order school pictures. She also likes to chastise me when she doesn't think I'm doing a good job with Ben. Thank God I had kids so they can keep me in line!

The other day, we were getting ready to go out and I decided to outsource nudging to Max. "Max, can you please tell Sabrina we have to leave soon?" I asked. He happily scooted up the stairs and said to Sabrina, "Let's go!" quite commandingly.

So from now on, I'm outsourcing parenting to Max. The end.

Tuesday, January 8, 2019

Introducing car therapy

This year, Max started opening the car door and getting in by himself. As with any one of Max's milestones, I remain excited even though this has been happening for months now.

This feat is especially awesome because it includes a variety of skills—the strength, balance and coordination to lift himself up into our minivan, grasp the door handle with his more functional hand (his left) and pull it in. Once he's settled in, Max will grab the seatbelt and pass it to me; he can't yet insert it into the buckle. He's also not yet able to maneuver the handle and push the door out when he needs to get out of the car. We've been trying and trying but, no.

And so, Max's next private occupational therapy session is going to take place in the car, where he and his OT are going to figure out a way to enable him to open the car door. 

Therapy isn't always a magical cure and therapists aren't miracle workers, of course. When Max was a toddler who wasn't yet toddling, even our absolutely incredible physical therapist couldn't get him to walk right away. Nobody could have—it had to come from Max, if it was going to happen at all, when he was physically and cognitively ready. As with all his milestones and inchstones, they're on his timeline and nobody else's.

What physical therapy has done for Max over the years is train him to use his muscles, and give him tactics and tricks to enable them to do what he wants them to do. When you have cerebral palsy, your muscles can't always respond to the signals your brain sends, which is why his hand and arm refuse to do his bidding with the car door.

One of Max's favorite activities is sitting in the car and pretend-driving our minivan (if you ever hear anyone honking in our driveway, it's him), so he's all sorts of excited about car occupational therapy. I have a feeling that, with focus and work, he's going to nail this one on the sooner side. But there's no rush—this boy has all the time in the world to make progress. 

Monday, January 7, 2019

Sorry, dude, I'm not playing along with your fantasy

It was inevitable: Within an hour of arriving at our resort in the Dominican Republic for vacation, Max had decided he wasn't returning home. This tends to happen anytime we go somewhere warm—Max does not like the cold. And he really likes palm trees. I even put up some in his bedroom for his birthday.

Last year, Max got fixated on moving to Jamaica when we visited there. Soon enough, he'd moved on to Orlando. It's where he's been planning to move in a few years. Only now he'd found a new fantasy destination. "It's disgusting at home!" he'd announce approximately every 10 minutes. "I'm staying here!" 

I tried, as I usually do, to reason with him. What about school? People don't live in hotels. What about Daddy's job? Mine? Didn't matter.  

Dave was Max's go-to enabler: "Yeah, we hate the cold!" Dave would agree. "It's disgusting at home!" And then they'd cackle and bow their heads over Dave's iPhone to check out flights to the Dominican Republic and figure out when they could return. When really wasn't going to happen anytime soon.

I'd brought a pile of magazines on vacation and happened to read an article in The New Yorker about a trend in the care of people with dementia: making the memories they perceive as reality actually seem real, to comfort them. One facility had been designed to resemble an old-fashioned town square, to evoke residents' childhoods. Some homes offer residents baby dolls, so they can pretend they are their children. Others have fake bus stops, so that if a resident asks to go home he can sit and wait for a bus with an aide. Hours later, once a person has forgotten why they are sitting on the bench, they can go back. The thinking is that deception is the most benign and compassionate choice.

And yet, there are those who oppose these fake worlds and false realities—including patients with dementia. They have moments of lucidity, and if they realize they are being lied to, it may create distrust that lingers. People with dementia tend to already be suspicious of people, and if there is inconsistency in what they are being told—one person might tell them their husband is shopping, another that he's dead—it could exacerbate their anxiety. As one expert said, "It shouldn't be about deceiving people. It should be about giving them meaningful lives in the present, rather than trying to keep them in nostalgic themes from the past." Rather than standing at a fake bus stop, there could be a conversation about the person's desire to go home and what home means to them. 

Obviously, Max's neurological condition is very different than dementia. But the point of the article—not lying to someone who can be readily deceived—struck home with me. Max deserves the truth, even if it doesn't make him happy. I do think he is aware he can't just up and move to the Dominican Republic, even if he chooses not to believe it. And while he may be temporarily happy if we play along, I don't want him to ever come to the realization that we're not always honest with him.

And so, Max would tell me he was staying in the DR and I'd say, "Well, you can't live in a hotel or move away from home right now but maybe next year we'll go somewhere warm on vacation again. Would you like to go to Hawaii someday? I was there once!" And he'd whine roar but I wouldn't give in. Or he'd tell me it's disgusting back at home and I'd remind him that spring would be here in a few months. Meanwhile, he wasn't giving up on his dreams of moving to Orlando, either—he'd spend six months in the DR, six months in Orlando. Like he was retired. Or a socialite.

This kept up until the day before we left, when I asked, "So, do you want to stop by the teen club in the morning tomorrow before we go home?" and he said, "Yes." He'd accepted that we were leaving. This did not stop him from crying on and off for the next few hours, including as we traipsed through Security at the airport. He wailed as the plane landed. 

By the next day, he was back to his usual self. Yes, he was walking around in his Dominican Republic hat, but he was asking to go to Home Depot, where he shops for his fantasy home in Orlando. That I'm more or less OK with. Maybe it's more extreme than your average wishful thinking and daydreaming, but he's not insisting on moving there tomorrow, maybe when he's 20. We're going to London in the spring. Who knows, maybe he'll take a liking to it, although tropical, it's not.

We went into New York City last weekend and as we headed home on the train and emerged from a tunnel, Ben asked where we were and I told him.

"It's disgusting here!" he said. 


Friday, January 4, 2019

The Disability Blogger Weekend Link-up: right here, right now

What to do if you're new  

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

Like this: The joy of spying on your child

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, January 3, 2019

When your child has the gift of charm

"Hola, Max!" Several days into our vacation in the Dominican Republic last week, we realized that Max had become popular at the resort we were at. Everywhere we walked, staffers greeted him. Kids said hello as well. "Hola!" Max responded.

Max has the gift of charm—a bright smile and a warmth about him that needs no words. After Dave dropped him off at school one day a couple of years ago and saw him greeting everyone in a hallways, he started calling him "the mayor." I'm grateful for his cheer, particularly because it opens doors for him.

Max got it into his head that he wanted to dance in the evening show at the hotel. We talked with the assistant entertainment manager about it. And wouldn't you know it, right at the end of a performance they called Max onstage and he grooved with the dancers, a giant smile on everyone's face.

Years ago, someone once pained me by saying that Max was cheerful because he was "simple-minded." That's hardly the case. Max's brain is as complex as anyone's. And he's ebullient and outgoing because he was born that way. It's one of his many assets. That charisma will serve him well in life—a way to help people see him, not just his disability, and appreciate him.

At times, I wonder how he might someday put his charm to use in a job—store greeter? Host? Politician?! I don't know. But what I do know is that as much as I do my best to make things happen for Max, he has the power to make stuff happen for himself.

Wednesday, January 2, 2019

The joy of spying on your child

Last week, we went to a resort in the Dominican Republic, the Hilton La Romana. It was fun, relaxing and the perfect opportunity to spy on Max as he asserted his independence. I wanted to make sure he could handle himself without him noticing me checking up on him.

My spying started on our first morning there, when Max decided he was going to carry his breakfast plate back from the omelet station. He'd done that when we were on vacation last year, but it still made me a little nervous—it is not the easiest thing for him to clutch plates. And yet, after I told the chef Max wanted a veggie omelet and watched from nearby, he held the plate firmly and walked confidently back to the table.

The next morning was even more thrilling, because Max decided he was going to order his omelet himself. Again, I hovered nearby. Max pointed to what he wanted—tomatoes, corn, peppers, cheese, no onion—to make his wants known to the friendly guy at the station. Max did this the entire vacation. Once, I noticed a couple watching Max as he pointed to what he wanted. They nodded in admiration, and I felt a surge of pride. I appreciate it when other people see his abilities.

For the record, I don't have a habit of spying—well, other than when I've showed up at Max's school for meetings and have sneaked peeks of him in his classroom. I do this with all my children; it's fascinating to see how they behave when they're not around you. You're all, WOW! WHO ARE THESE HUMANS I CREATED?! It's been my experience that Max tends to be more independent when he's at school and at camp. When he was around six, I walked into his classroom one day during lunchtime and was astounded to find him feeding himself—he wasn't doing that at home.

Max often breaks out of his comfort zone when we are on vacation, trying new things and flexing his independence. Now that he's getting older, it's especially important to me to see how he does on his own. I want him to do things by himself. But: I worry about him doing things by himself. Recently, we went to drop off holiday cookies at a neighbor's house. Max insisted that I stay in the car so he could walk up the stairs and hand the bag over. He made it up two of the large concrete steps then stopped. "I"m stuck!" he yelled, and I zoomed over before he could fall; one foot was caught on the lip of a step. Still: step by step, bit by bit, I know the independence will come, and I'll have to chill or develop a Xanax habit.

As in recent getaways, Max wanted to hang at the teen club alone. He played pool and foosball with the staffers there or watched TV or videos on his iPad. On occasion, he'd take a walk with one of his favorites, Nikki, to grab a piña colada (con chocolate). A few days in, he started greeting people with "Hola!"

One evening, after dinner, Max informed us that he wanted to head back to the teen club. "Are you sure you can get there yourself?" Dave asked. Max had been walking there alone from our room, but the restaurant was further away and it was dark outside, although the grounds were well lit. "Yeah!" said Max. As I watched him stroll off I was seriously tempted to follow behind, but I held back—it didn't feel right to cross into stalker territory. Dave and I did a walk-by a bit later, and Max was just fine.

The best spy moment of all happened when I headed over to the teen club to grab Max for dinner on another night and spotted him playing basketball with a boy. I watched from behind a wall, in awe. Max did his best to toss the ball toward the net. He didn't have the flexibility and arm force to get it up high, but that didn't matter. The other boy simply grabbed the ball and tossed it back to him. Sometimes, Max caught it. Mostly, he passed it.

My heart did flip-flips as I watched. It was one of the only times I could ever recall Max playing independently with another kid—as in, not through a planned activity or program. Just two boys, enjoying themselves on vacation.

I left them playing and took a walk. Dinner could wait.

Tuesday, January 1, 2019

The Love That Max Year in Review 2018

A look back at the year's highlights, tough moments and everything in between.

In January I pondered how to deal with screen time and children with disabilities, shared a secret to instant optimism and opened a discussion about people's biases about disabilities before they had a child with disabilities.

In February I gave props to the mom who invented Caroline's Cart, got excited because Max hated me. revealed 11 million ways to head off a cold (including Vitamin Cadbury Creme Egg) and celebrated Max's speech progress.

In March I shared Raising Children With Disabilities: Someday You're Going To Wish This and an awesome viral video by parents of children with Down syndromecelebrated 13 years of Sabrina; and vented about all the uphill battles we fight for our children.

In April, I mused on our children achieving stuff later (or never), got excited about a boy with disabilities I watched mailing a letter and gave a virtual hug (and reassurance) to moms who cry in their cars after IEPs.

In May, Max became a backseat driver and marched in our town's Memorial Day parade and I gave props to us moms for pushing past every "no."

In June, Max went to prom and told me he wanted to take an Uber, and I discussed the invisible labor dads of disabilities do.

In July, Max headed to the movies alone and I ranted about Starbucks ditching plastic straws and mourned the surgery that didn't work.

In August, I noted nine amazing things about this photo, shared the scoop from a mom of a child with disabilities who starred in a Target ad and felt grateful for the amazing thing a mom at the other table did.

In September I talked about parenting a child who is multiple ages and discovered that special needs moms would be worth $828,836 a year if we got paid for all the jobs we do. Also: Max wrote about his fantasy house in Orlando.

In October I noted one good way to tell how a child was raised—how they treat those with disabilities, celebrated Ben's third birthday, got giddy about Disney Cruise magic and paid tribute to the blessings the murdered Pittsburgh brothers with disabilities left behind.

In November, I felt gleeful when Max ratted his dad out; shared the abilities people don't see; and celebrated the tenth anniversary (!) of this blog.

In December, I shared 16 things I couldn't have imagined when Max was born in honor of his 16th birthday; a great short film about including kids with disabilities; and the best email in the history of emails (because Max wrote it).

Wishing you a 2019 filled with happiness, milestones and inchstones, fun times, minimal drama and much greatness.

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