Monday, July 30, 2018

Would you consider a divorce to help your child with disabilities? Some couples are

It's commonly thought that parents of children with disabilities are at higher risk for divorce. One study from 2015 found, however, that parents of kids with developmental disabilities were no more likely to split up than other moms and dads, especially as they had more children. But now there's a troubling new divorce reality: Some couples are considering breakups solely so their children with disability can get benefits.

Expenses for caring for a child with disabilities can be high, yet if a family earns too much, they are ineligible for Medicaid benefits to help pay for care. It's a different story for a single parent, who would report far less earnings. An article in the Dallas News featured interviews with several couples in Texas. One set of parents, who have a daughter with cerebral palsy, had considered divorcing but decided against it for religious reasons. Another couple, married for nine years, had gone public with the news that they were considering divorce so their six-year-old with a genetic disorder would qualify for Medicaid. A third couple ditched Texas and moved to Arizona to get benefits for their son.

It seems that, unofficially, caseworkers occasionally recommend divorce as a way to get benefits. The article notes that while it isn't legal to file for divorce under the pretense of a spousal conflict when what you really need is benefits, Texas has no record of prosecuting these cases. Meanwhile, Medicaid in Texas is stretched tight, with lists for equipment, home care and other services running as long as 93,000 names.

I doubt this phenomenon is limited to Texas. While I don't know of parents of children with disabilities who've divorced for this reason, I do know of families who have moved to other states so they could get better benefits.

What this points to is failure at the state and federal level to provide for the needs and sustenance of children with disabilities. The cuts to Medicaid in the proposed 2019 budget could make the situation even more dire. Adults with disabilities face additional challenges; three states—Kentucky, Indiana and Arkansas—now have waivers with work requirements for Medicaid recipients, which can pose a tremendous obstacle.

To be sure, the stress of caring for a child with disabilities can strain a marriage. But the stress of dealing with a government that doesn't help—and not being able to give your child what they need and deserve—is even worse. While it's awful to think that couples would go to the length of legally divorcing to resolve their benefits situation, it points to a basic truth of being a parent of a child with disabilities: We try to do whatever is within our powers to help our children, and enable our families to exist.

For more info

Here's a look at Medicaid requirements state by state

A good piece on the issues with block grants for people with disabilities

Want to contact your elected officials? Click here.

Where's my Moscato and other important things in life

A year ago, the impossible happened: I went on a girls' getaway with my two best friends. We were all "Hey, let's do it next year!" This weekend, the impossible repeated itself: We managed to go away together again, and once more I felt like someone hit my reset button. 

We were in Delaware's Brandywine Valley, a historic area filled with mansions, museums, wineries and great restaurants. The DuPont family settled here in the early 19th century, opening the gun powder company that would lead to their fortune. We stayed at the beautiful DuPont hotel. We wondered why we are not DuPonts. 

My friend Wendy reminded me that someday I am going to miss having Ben crash in our bed, but I'll just say I did not miss having someone kicking me in the middle of the night.  

Scandal occurred during high tea (Wendy's on the left, Hedy's in the middle), when I accidentally ate one of Wendy's scones.

We went to the spectacular...

...Longwood Gardens...

...and I could not stop...

...taking pictures of flowers.  

We saw a show there at night, Music Man, followed by a fountain display. 

We toured the Winterthur mansion mansion and wondered what you'd do if you had 175 rooms in your house. 

We wondered why we did not have a small room to hold all our candlesticks and candelabras.

I actually had time to stand somewhere and just look up.

We did did a wine tasting, then hit another winery and had some more. I like sweet—Moscato's my fave. You?

We toured the Nemours mansion...

...(a mere 77 rooms)...

...and gaped at this view. #notapostcard

We got spa treatments. We played mini golf. We checked out the Wilmington Riverfront and a crafts fair. We learned fun facts!

Yes, I missed the kids. I got a video from Max at camp and one of Ben saying "I love you, Mommy" and I could not stop watching them. But I so needed this time to relax, enjoy, wander, wonder, reboot and not pick up anyone's towels or tackle any of the kajillion chores or to-dos on my list. 

I know getaways aren't easy to plan. But if you haven't done anything like this in a while or ever, DO IT, in whatever way you can make it happen. You deserve it.  

Friday, July 27, 2018

The Disability Blogger Weekend Link-up: your weekly read-a-thon

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: Be yourself, everyone else is taken

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

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

Wednesday, July 25, 2018

Treatments for children with cerebral palsy: Sometimes you win, sometimes...

Next month, it will be nine years since Max got his stem cell infusion (there he is at 6, above). And it will be one year since Max had surgeries to straighten his right foot and reduce the flow of saliva. We are not sure the stem cell transplant was a success, but we're glad we did it. We know for a fact that the surgery to control drool was a fail, and I have some guilt about having gone through with it.

We knew last year that we needed to do something about Max's right foot, which was turning in. A surgery called Selective Percutaneous Myofascial Lengthening (SPML) can help by basically releasing tight tendons. During a consultation, the doctor recommended a colleague who does a procedure called a tympanic neurectomy; it involves severing nerves that feed into the salivary gland, which would be accessed through Max's ears. It could be done right after the foot surgery, so Max would only go under anesthesia once. The doctor said that while he'd mostly operated on younger patients, he thought Max would get good results, and there were small studies that showed it could be effective. I checked in with Max's other doctors, who thought the surgery was worth a try.

Something weird happened with the saliva surgery: the doctor came into the waiting room and told us everything was fine, but he had not been able to find one of the nerves he needed to sever. Yes, could not find. He said it could have melded to the bone. Otherwise, Max was doing well. He'd sustained a small puncture in his ear drum, but it would heal, he reassured us (and it did). He offered to revisit the surgery, but we never did. We weren't game to have Max go under anesthesia and let the doctor invade his ears and glands for a procedure that could very well fail again.

Dave and I had known about behind-the-ear patches, scopolamine, that could help. They're the same ones used to treat sea sickness; one of their side effects is that they dry up your mouth. But we'd thought it would be for the best if we could find a permanent way to alleviate the drooling, why we went for the surgery.

The patches are doing their job—not completely, but enough. Still, I have a guilt hangover that the surgery didn't work, and that we put Max through an unnecessary procedure. The drooling doesn't bother him—he doesn't much notice it—but it's going to become more an issue when he gets into the work world. Already, it's one of the things that makes other people stare although he doesn't notice that, either.

Being the parent of a child with disabilities means shouldering heavy responsibilities, including making medical decisions for your child. We've always been of the mindset that if it couldn't hurt and it might help, we'd try it, and we forged ahead in that same spirit. For the first time in my life, though, I've felt dubious about a decision.

I don't feel that way at all about Max's stem cell therapy. We had the cells, which we'd banked at birth just in case. The procedure, done at Duke University by the wonderful Joanne Kurtzberg, went seamlessly. We didn't see any major changes in Max afterward, but he just kept progressing. We will never know how those stem cells helped him, if any, although a couple of promising studies have subsequently emerged, including one last year that showed brain connectivity and motor function improved in children with CP one year after a stem cell infusion.

I guess that's the way it goes. You use your best judgment. You hope you are doing right by your child. But you won't always be so sure.

Ice-cube painting and other summer fun for kids with disabilities

Want your children to have fun this summer and work on their fine-motor skills, while they're at it? Sure you do! These five ideas I've shared before on the blog, courtesy of Southern California OT Abby Brayton-Chung, are so enjoyable kids will have no clue they're therapeutic, too.  

Paint with ice cubes. Mix watercolor paint with water, fill an ice-cube tray, freeze overnight, and voila, ice-cube paints—great for grasping and sensory exploration. Run them over paper or fabric.

Play with wet sponges. Set out a bucket of water and some oversize sponges. Done! Kids can squeeze water out, throw them at a target, or walk barefoot on a bunch you've laid out in a path (a good way to work on balance, too).  

Toss around pool toys. Water makes it so much easier for children to move their arms and legs. Big pool, kiddie pool, doesn't matter! Hold a pool noodle or ball away from your child and encourage them to reach out and grab it. Play catch. Encourage them to dunk the object underwater, then let it pop up.  

Build a sandcastle. The classic! Bring along plastic measuring cups with big handles and spoons so it'll be easy for children to scoop up sand. Search for seashells and rocks they can pick up to decorate their design. If you're not in a beach area, any container that holds sand can be used to build castles right in your backyard.

Squeeze it. Condiment containers from the dollar store are excellent for squeezing and spraying word. It helps with hand strength and coordination, as well as visual motor skills if you aim for a target (or a person)! Try using them for creating sandcastles too.

Images: Flickr/hartwhereluv2photo20, tomo_moko, mayorgreg

Tuesday, July 24, 2018

Profile of a toddler

Name: Ben, age 2 years and 9 months

Also goes by: Benny, Benjy, Mushy, Yummy Boy, "STOPPPPPP OR YOU'LL GET HURT!!!"

Favorite activities: Playing with toy trains and trucks, flushing the toilet, not eating vegetables, driving through tunnels in our minivan, locking the bathroom door from the inside, playing with sand, playing with the water faucet, pushing his ride-on car around the neighborhood instead of actually riding in it, throwing anything he can get his hands on over the railing of our porch, not napping, riding his backyard roller coaster, leaving trails of graham cracker crumbs.

Favorite book: All the train books

Favorite foods: Bananas, pizza, broccoli, crackers, peas, cookies, ice-cream, chocolate and everything else that has lots of sugar

Favorite drink: "A smoothme"

Notable talents: Saying the ABCs, counting to 10, knowing exactly when Mommy could use a kiss (all the time), giving the side-eye

Especially awesome stuff he says: "lookit!" (as in, "Lookit! Bug!"); "onish" (ocean/lotion); "oh my gosh!"; "Sorry, Charlie"; "hold you!" (he means, "hold me"); "8:40!" (whenever you ask him what time it is).

Favorite drink: Milk. Warm, not cold. Shaken, not stirred.

Favorite place to be: The playground or our bed at 2:00 a.m.

Most puzzling thing he says: "I like soda!" (He's never had it.)

Favorite song: "Twinkle, Twinkle Little Star" sung at the top of his lungs

Favorite TV show: Sesame Street or any football game

Particularly interesting habit: Randomly starting to dance, like when he's sitting at breakfast and eating pancakes.

Worst habit: See: "Our bed at 2:00 a.m."

Other worst habit: Gleefully swiping piles of papers off counters. Although he always says "Sorry!" first before he does it. 

Best accessory: Sun hat

Favorite way to chill: Foot rub

Celeb he's obsessed with: Cookie Monster

Most likely to grow up to be: An engineer—he's fascinated by how toys work. Or a lawyer, as he's always negotiating ("Two more minutes!").

Monday, July 23, 2018

Be yourself, everyone else is taken

"Be yourself, everyone else is already taken," Oscar Wilde once said. I heard during a performance of Kinky Boots I recently saw on Broadway. The show was all sorts of memorable, but that quote stood out. Not long before, I'd seen Won't You Be My Neighbor?—the documentary about Mr. Rogers, and I had individuality on the brain. 

Max started wearing his Fireman Max firefighter again. We're not sure why he'd stopped, but we think he got back into it because he was going to camp and wanted to make a statement. I got this pic of him yesterday and there he was in all his red hat glory, painting.

Max has no qualms about being a 15-year-old who walks around in a plastic firefighter hat that says "Hello, my name is Fireman Max." It does draw attention to him, although even when he is not wearing it, people stare. Little kids sometimes ask "Why can't he talk?" and "Why is he drooling"? I usually tell them, "He does talk—he is talking in his own way" and "Because sometimes his mouth doesn't swallow fast enough." m

Max's physical and cognitive differences are a part of who he is, not all of him, although sometimes they are all anyone can see. Max could care less, partially because he is not aware of the stares, and partially because he doesn't see himself as very different from others. He is content with who he is.

"It's you I like" is Mr. Rogers' theme song. The documentary had a clip of him singing it to Jeff Erlanger, a boy in a wheelchair, and I sort of lost it. I wasn't sad—I just ached. Ached for people to be more welcoming to our children with disabilities and treat them less like wholly other human beings. It starts with parents talking with their children—encouraging them to say hello, discussing their questions, explaining what's more alike than different (see: How parents can talk to kids about ones with special needs).

Maybe it's hard for people who don't have loved ones with disabilities to understand, but I don't wish for a different Max. I wish for people to respect, embrace and appreciate him for who he is. All of him.

It's you I like
It's not the things you wear
It's not the way you do your hair
But it's you I like
The way you are right now
The way deep down inside you
Not the things that you
Not your toys—
They're just beside you.

But it's you I like
Every part of you
Your skin, your eyes, your feelings
Whether old or new
I hope that you'll remember
Even when you're feeling blue
That it's you I like
It's you yourself
It's you, it's you I like

Friday, July 20, 2018

The Disability Blogger Weekend Link-up cordially invites you to 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: He saw a movie by himself and other unexpected milestones

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, July 19, 2018

Tips for fundraising for a child with disabilities from a mom who knows

This guest post is by Brooke B., mom to two-year-old Nicholas. Brooke adopted Nick in 2016 as an infant. Several months later, after he started missing milestones and his muscles tightened up, it was revealed that Nick had a stroke during his birth mother’s pregnancy; as a result, his brain had malformations. Nick was eventually diagnosed with cerebral palsy, epilepsy and cortical visual impairment. Brooke describes her son as “beautiful, soulful and very engaged with his caregivers.”  

The family is in need of an adaptive van, so Brooke decided to do a GoFundMe campaign. Along the way, she picked up some good tips about raising funds, and wanted to share them with the community (and do more fundraising, while she's at it).

It took my son longer to smile than most babies but when he got the hang of it, he already had two beautiful front teeth to show the world. His gap-toothed grin is one of the most brilliant things I have ever seen. The sight of his smile is only eclipsed by the sound of his disarming giggle.

My husband and I want to expose our happy boy to as much of life as possible. But driving in our small SUV is hard, because we need to take Nick in and out of a traditional car seat without him being able to move his body. This poses a safety hazard for us all. Our car situation also makes transport to medical appointments challenging.

A few weeks ago, with large expenses like additional caregivers and adapting our home looming, we decided to take a leap and build a GoFundMe page to raise $35,000 for an adaptive van. This wasn’t an easy decision—it’s hard to ask for help, let alone so publicly. But people on Nick’s medical and therapy team had encouraged us to do so. We couldn’t do it without help.

We’d heard of people using the site, and it seemed credible. I never imagined what we’d learn along the way. Some of the key things:

It’s important to decide ahead of time how much info you want to share.

We haven't told our story in any public forums before now. We hadn’t even shared it with family members, let alone colleagues. We made a conscious decision that it was for the greater good for our son and our family to tell his story in order to get support we desperately need.

We have not posted Nick’s full name. While it’s OK to not use real names at all or to only reveal certain details, we decided that it felt the most authentic for us to tell most of the story, and to allow people to relate to us at a highly personal level.

You’ll learn to be an online octopus (as in, cross-platform pollination).

Prepare blurbs about your fundraiser for Facebook, Twitter and Instagram. They are all different and getting your words and pictures to go viral on one means something different than another.

On Facebook, you want to set up a Facebook event page for your campaign (a friend did this for us). It’s important for several reasons:

• We could invite our friends on Facebook to like and share the page. Once you’re an admin of the page, you can invite all of your friends to like the page in one click.

• My friend uploaded a few engaging videos of Nick and ran ads against those videos, testing to see what types of videos people best responded to. This is an example of one of the videos that performed very well. As awesome as your child may be, you want to make others aware of it—and so you offer something in exchange for asking someone to click on your links when you cast a net wide through paid advertising. Seeing a happy, cute boy with an infectious giggle helped us share Nick’s personality and ultimately, get donations and shares.

• People could now share either the Facebook page or the GoFundMe page as they preferred without tiring their audience. We could offer different types of posts on the Facebook page, even campaign updates.

Here is the best tip for posting on Twitter and Instagram: hashtags, hashtags, hashtags. Like, #donate or #dogood or the name of the medical diagnosis, in our case #cerebralpalsy. Using the right hashtags helps people track on a conversation and get your message where like-minded people are virtually gathering.

Try to get star power behind you.

One other thing we did was tweet at celebs, after we did a search for “celebrities with cerebral palsy.” They tend to have large social media followings, and can amplify your fundraiser. The fabulous comic Maysoon Zayid tweeted the post I asked her to. We also approached folks like RJ Mitte, whose character is the son of Walter White on Breaking Bad.

GoFundMe: the good, the bad, the ugly

If you’ve ever donated to a GoFundMe campaign, you’ll notice that right before you click “donate," they ask you to leave a tip so that the platform can continue to offer “free” services to the organizers. But this isn’t exactly true. On the platform’s site, it clearly states that they charge 30 cents per donation, along with a 2.9% fee from the total amount that you raise for “payment processor fees."

For a platform that charges a fee, we had hoped that we would have some ability to design the web page a little better than we could. The only option for modifying the font to emphasize content, for example, is boldfacing, and you have very limited ability to control the size and placement of your images.

What you do get is a platform that people trust, for the most part, and this does lend credibility to your campaign. It was pretty easy to get the page up and running, and withdrawing the funds isn’t overly complicated. They also have fairly decent support articles to help you build and manage your efforts.

You’ll realize that you are not alone.

We have experienced great feelings of isolation over the past two years since Nick came into our lives. The first year with him in particular was deeply disorienting for us and filled with hospital admissions, trips to the ER, trials and errors with feeding tubes, procedures, tests, sleepless nights and mastering a whole new vocabulary.

When we put up the fundraiser, we were obviously hoping for money; we didn’t expect the giant bear hug from a global community, or how not-alone our GoFundMe would make us feel. Within 48 hours, we’d heard from college buddies, hometown connections, people we’d done business with and strangers who had seen the ad we posted through Facebook. Donations poured in from India, France, Switzerland and beyond. Some folks gave large amounts like $1,000. Some left only uplifting comments. Both have been equally welcome.

Because we are always rushing to appointments, ordering home supplies or holding a large toddler who hasn’t learned to sit in his “activity chair” yet, there isn’t much time for mulling over things. But whenever I get a notification that another donation has been made, I feel beyond grateful to everyone who has supported us.

If you decide to embark on this wild journey of medical fundraising for your child with disabilities or someone else in need, I wish you all the best. And of course, if you’d like to contribute to our fund, head over here—it’s our fifteenth day and we’re coming along nicely, though we're not there yet.

Wednesday, July 18, 2018

The right way to play pool or, really, do just about anything

The right way to practice playing pool:

1. Attend your sister's camp Visiting Day in the stifling heat. Take refuge with your family in the ac'd staffer lounge, where there is a pool table.
2. While your mom and dad are standing on line at the canteen to get cold drinks, pick up a pool stick. When your mom comes over and tries to help you better grasp it, ignore her and hold it the way you want to. Maybe it looks uncomfortable to her but you're the one with cerebral palsy and you know what works for you so buzz off, Mom.
3. Start pushing the balls into the pockets. You don't need that white ball, anyway. It's just as fun to directly knock the balls in, and just as satisfying to hear that "thunk!"
4. Not notice and/or care when people watch you curiously. Who the heck cares what people think? You're having a good time and that's all that matters.
5. Really, why does there have to be just one "right" way to hold a pool stick or play pool? The right way is whatever works for you.
6. If only people cared less about the "right" way to play, to move, to talk, to look, to think, to be, people with disabilities would face a lot less prejudice and discrimination in this world.
7. When your little brother grabs a couple of balls and takes off with them, laugh. He's silly!
8. Finish knocking every single one of the balls on the table into the pockets, on your own sweet time.
9. Flash your parents a victory grin. Because you did it. Your way. The best way.

Tuesday, July 17, 2018

Heard the one about the comedian who won't stop ridiculing people with Down syndrome?

Heard the one about the comedian who makes fun of people with Down syndrome? Not funny, right? But Tom Segura thinks it is. And he's been refusing to remove the offensive, hurtful bit from his Netflix comedy special, Disgraceful. This despite the fact that people with Down syndrome, their families and other advocates have pressed him to do it for seven months straight now.

Disgraceful aired in January. There was this bit:

Followed by this scenario, in which he pretends to react to a friend's bad idea without being able to use the r-word:

Now you can't say that, you've gotta be like, "That's not smart. Your idea has an extra 21st chromosome, if you ask me." 

His point: Ijust doesn't have the same impact without the r-word.

Immediately, there was an outcry. Special Olympics, Best Buddies and a group of advocates appealed to Segura and Netflix. A Take It Down, Netflix petition went up. After numerous email exchanges, there was a meeting in June with Segura; attendees included Special Olympic athletes and Global Messengers Dustin Plunkett and Rachel Osterbach, along with Nancy Gianni of Gigi's Playhouse and her daughter Isabell. Word is that Segura referenced removing the material, but later declined, as did Netflix. This weekend, an Op-Ed ran in the L.A. Times by a writer with two brothers who've participated in the Special Olympics denouncing him and Netflix, too.

When I've spoken out about the r-word over the years, some people have responded that other disparaging words will crop up to take their place. That's for sure. Now we have this so-called comedian who's actually made that part of his routine, and Netflix sees nothing wrong with it.

In his riff, Segura noted that the r-word typically isn't used these days to describe a person with Down syndrome—it typically describes a stupid idea or situation. He implied that caring about the usage of the word is ridiculous.

I'll tell you what's ridiculous:

Believing that this is the best comedic material you can come up with, and clinging to it. Because that's what you put into a routine, right? Your best material. This is the best this guy has.

I'll tell you what's ignorant:

Not understanding why the word is painful, even if it's not used to describe someone who has Down syndrome or intellectual disability. Using that word as a synonym for stupid or loser or annoying or whatever negative thing only reinforces old stereotypes, making life that much harder for people with intellectual disability like my son.

I'll tell you what's despicable and cruel:

While there are plenty of advocates with intellectual disability who can and do speak up for themselves, not all can—let alone children. Demeaning and debasing people who are defenseless, and roping others into laughing at them, is about as low as you can go.

I'll tell you what's extra sad and pathetic:

Blatantly ignoring the efforts of people who are often mistreated to gain respect for themselves. I just don't get how it's possible sit in a room with self-advocates who have Down syndrome—the very people you've degraded; hear their reasoning; then turn them down.

We've been down this road before. A couple of years ago, another comedian had a special—this one on Showtime—in which he demeaned a supposed cousin of his with Down syndrome. After considerable protest, Showtime removed the program from its lineup. The comedian took the material out of his skit.

Really, there's only one inarguable point here: People with Down syndrome and intellectual disability are not laughable human beings. My son is not a laughable human being. Make fun of human foibles all you want, as comedians often do—but quit seeing disabilities as defects. We certainly don't see it that way. My son is all-around awesome. Also: He's got way higher emotional intelligence than Tom Segura.


You can sign the petition asking Netflix to remove the material from the show here

Monday, July 16, 2018

He saw a movie by himself and other unexpected milestones

"I want to see Incredibles 2!" Max announced. We were upstate NY two days before Sabrina's camp Visiting Day. We'd decided to make a weekend of it, so I'd booked us into an Airbnb cottage and we had time to chill. As we walked around a cute town Friday evening, Max spotted the movie theater.

Now, Max wanting to see Incredibles 2 was not unexpected. So far, he's seen it four times and it seemed inevitable he'd want to go again. What was unexpected was what he said next: 


He wanted to go to the movie by himself.

I guess I wasn't totally surprised, because Max has been pushing for more independence. (See: "I want to take an Uber.") I also suspected it was a measure of self-preservation—Dave and I have each seen it with him, and Max probably figured he couldn't get us to see it again. 

WeI talked about it. There was a matinee on Saturday at 12:15. We were in a small town. We could get Max seated in the theater, have lunch nearby and check on him. "Yes," we said.   

The next day, after an early breakfast, we checked out a Farmer's Market and a few stores. At around 9:30, Max started asking to go to the movie theater. We held him off till 11:15, at which point we got him a ticket and got him settled in the empty movie theater, toward the back. 

"Bye!" he said. 

I left, feeling a little nervous. We hung with Ben at a nearby playground for a bit. I kept picturing Max in that theater, alone. Thoughts of pervs flashed through my head. Should we have left him there? I went back into the theater as the movie started. A bunch of people were there. Max startled when I whispered "Hi! You OK?"

"Yes!" he nodded, not even looking at me.

I kissed him and walked out. We went to lunch. Then Dave went in and walked out a bit later with Max, who had the hugest grin on his face.

"Did you enjoy seeing it again?" I asked.

"Yes!" he said.

Later, Dave and I were talking about it.

"Did you ever imagine Max would see a movie by himself?" he asked. 

"No, I never imagined it," I said. "There was a time when I couldn't have even imagined he'd even see a movie!"

It's true. I don't have expectations for Max doing stuff he currently doesn't do. Not because I don't think he's capable, but because I know he's on his own timeline and he'll do stuff when he's ready...or not. Heck, I can't even remember when I first saw a movie in a theater by myself, or what it was. I'd guess in my twenties. Definitely not at fifteen. 

When Max was younger, movie theaters scared him. We were able to take him to see drive-in movies first. But when Monsters University came to the theater in our town, Max said he'd try to see it. And he did. And, whoa, that was five years ago this weekend—so I guess major movie events in Max's life happen every five years. Who knows, maybe in five years he'll be starring in some summer blockbuster. 

Two thumbs up to my big guy.

Friday, July 13, 2018

The Disability Blogger Weekend Link-up: 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: Hey, Starbucks, ditching plastic straws isn't good for people 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, July 12, 2018

Sometimes, it's hard to imagine people who aren't like you, but that's no excuse not to care

Until I had Max, it never occurred to me that a baby could have issues with drinking or eating. But Max did. The cerebral palsy impaired his ability to suck and swallow. When I nursed him, it could literally take an hour. When he started taking bottles, we had to place multiple diaper cloths beneath his chin and over his chest to absorb the milk that would dribble out of his mouth. When began to eat baby food, it would also take a very long time because he would thrust out a portion of the spoonful and we'd have to spoon it back in.

Before Max came along, I really didn't know much at all about cerebral palsy or how it could affect a body's function. I'm thinking about this today because of the reaction to the news that Starbucks will be ditching plastic straws and instead offering up paper or compostable ones to those who need them.
A lot of people out there didn't get what the big deal was for people with disabilities, although parents of children with disabilities and adults with disabilities did our best to explain it.

I understand why people don't get it, because I was once that person—but it was disturbing that some people were being downright ableist.

People questioned: Why can't people with disabilities bring their own straws to Starbucks?

Well, because if you're forking up the bucks for a Starbucks drink, you darn well deserve to be able to drink it without BYO-ing anything. The onus shouldn't be on the person with disability to figure out how to consume a $4.00 latte.

Others questioned: Don't people with disabilities care about the environment?!  

Heck yeah, of course PWD care about the environment, but they also need to live their lives. Announcing that a tool that's vital to their existence will be disappearing without offering an equivalent replacement isn't OK.

And yet more wondered: Why is this another battle that has to be fought?

I'm not a PWD—I'm the mother of a child with disabilities. Still, if I point out that plastic straws are useful to my child with cerebral palsy, and ask for Starbucks to come up with an eco-friendly version because they're planning to get rid of them, there is no reason to question or oppose me. Same goes for people with disabilities who've spoken out about this. There's no ulterior motive here, no desire to be oppositional for the sake of being combative. What's at hand is a basic human need, and a basic human right.

For sure, I have a whole lot of other stuff to content with and battles to fight to help my son. But people with disabilities deserve to have access to all things in life, frappes included.  

Wednesday, July 11, 2018

The special joys of your last child

"Are you having a completely different experience than you did with Max?" the woman asked me. I knew her from our area; we'd bumped into each other in the park as Ben was climbing the jungle gym. I understood the meaning of the question: Because your first son has disabilities, is raising a child who doesn't have them very different?

"Yes—and I had a completely different experience with my daughter, too!" I told her. "Raising every kid is a whole other experience. But honestly, I think the main thing that makes this time around feel so different is that we're experienced parents, and we know he's our last child."

It's true. What's making parenthood the third time so distinctive is because we know we're not having any more kids, and we're relishing the big and little moments with Ben. We took him to A Day Out With Thomas over the weekend. It was the highlight of his young life, but I think there's a chance Dave and I enjoyed it even more.

We didn't tell Ben we were going, we just surprised him. At first he couldn't even smile, he was so awestruck. But when we went on the 25-minute ride to and from nowhere  (aka Sodor), he was gleeful. I'd brought along his Thomas whistle and he blew it happily, making the kids seated behind us laugh.

I felt giddy watching him enjoying himself. I giggled when he did at the puppet show. I felt like I was seeing the world anew through his eyes. I marveled at just how absorbed he was in the tent that had several Thomas tracks with trains chugging around them..

I've been down similar roads before. I can still remember the exact smile on Sabrina's face when she met the princesses in a little room at Disney World, and how Max looked when he first encountered Lightning McQueen in Cars Land at Disneyland. (He liked Thomas enough, but his true love was Lightning). As a parent, your children's joys are your own. But it's been a while since we experienced the pure joy of meeting a favorite character, and we know all too well how fast the time goes by and suddenly your children have developed entirely new obsessions (like, say, overpriced teen costume jewelry and moving to Orlando).

And so, we savor the moments: reading to Ben at bedtime, watching him "swimming" in the pool, hearing his made up words ("LOOKIT! A bug!"), appreciating his art projects, celebrating his "I did it!" moments, seeing him try new foods (he's taken to asking "Is it spicy?"), pushing him higher and higher in the swing as he says "To the sky!", cherishing the naughty-yet-hysterical things he does, like how he says "Sorry!" right before he pushes entire stacks of papers off the kitchen counter. I am fascinated by his habit of lying on the floor and rolling trains back and forth and back and forth. I lie down and watch him, too.

When I pick him up from camp on Mondays and the counselor walks him out the door and he trots down the path and says "Hi, Mommy!" so excitedly in his sweet little voice, I melt. There are times when we are driving in the car and I take his hand (he likes me to sit in the back seat with him) and just stare at the little indents where knuckles should be and the line around his wrist that is still there but will soon go away. Dave and I get a little sad with his development; he used to say "onish" for ocean and lotion, but now he says them correctly. We will likely be despondent when he quits asking for a "bottie," his word for a cup of milk; stops confusing his pronouns (he'll say "carry you!" for "carry me!"); and no longer refers to himself in the third person ("Ben likes football!" "Ben likes chocolate!") Soon, he'll be toilet trained and so long, diapers. And while I can't say we will miss the blowouts, those times when we stare down at him on the changing table are irreplaceable.

And the way he runs, not walks, everywhere.

And how his lashes look when he cries.

And how his mouth looks like he is sleeping and how he sleeps with his butt in the air and the way he holds his hands up for me to take him out of the crib when he gets up.

And the way he adores having his feet rubbed while he sucks his thumb.

Oh, the thumb sucking.

And how he says "It's 8:40!" every single time when we ask him what the time is.

And the way he looks in his little collared shirts.

And his little socks.

And his sun hats.

And how he announces "Ben goes pee pee in the potty!" when he's done.

And the way he sucks on the toothbrush instead of brushing.

And how he throws a ball, with all his might.

And how he says "Mommy, help!" when he needs a hand climbing in the park.

Oh, there are so many little things he does and says and as in the moment I may be, there is that voice in the back of my head saying that soon this will pass, making me appreciate just how precious it all is.

Tuesday, July 10, 2018

Hey, Starbucks, ditching plastic straws isn't good for people with disabilities

Following on the heels of Seattle's ban of plastic straws and utensils, yesterday Starbucks announced that it would eliminate plastic straws by 2020 in all 28,000 of its stores worldwide. Environmental advocates were excited, as the straws are not recyclable. But it was not good news for people with disabilities, who depend on flexible plastic straws.

Max has yet to master drinking from a straw; the cerebral palsy, which impacts his oral-motor function, makes sucking up liquids and swallowing a challenge for him. He works on it during speech therapy sessions and with us, too. We like the straws at Starbucks; they're pretty sturdy. Ditto for the ones from Burger King. Both come in handy for practicing. Not that I know any mother who'd swipe straws so her child could succeed in slurping.

Starbucks says that straws made from "alternative materials—including paper or compostable plastic" will be available by request for customers who prefer or need a straw. But they could be problematic for people with disabilities.

It takes Max a long time to practice drinking with a straw, which is why paper ones won't work—they'd get soggy and could disintegrate in his mouth, posing a choking hazard. He also can't control his bite so well, and could chomp off a piece of a paper one and choke on it. The same goes for adults with disabilities. Some people who have issues with coordinating swallowing drink through straws for safety reasons; a straw can facilitate swallowing so that a person doesn't aspirate and get liquid in their lungs, potentially leading to pneumonia. 

"Metal, glass and bamboo straws present obvious dangers for people who have difficulty controlling their bite, as well as those with neurological conditions such as Parkinson's," writes Jamie Szymkowiak, cofounder of the Scottish disability rights group One in Five, in a guest post for Greenpeace. "Some disabled people use straws when drinking coffee or eating soup, yet most of the alternatives—including the leading biodegradable straw—are not suitable for drinks over 40 degrees." Carrying around a reusable straw isn't an option for adults with disabilities who may have issues cleaning it. 

Banning straws is trending. The EU recently banned plastic straws and utensils. Starbucks' proposed replacement, strawless lids with a raised part (they've been called "adult sippy cups") aren't going to be an option for people who have issues grasping a cup or controlling the flow of liquid. 

Eliminating straws came in response, Starbucks says, to requests from partners and customers. Says Colleen Chapman, a Starbucks v.p. who oversees sustainability, "Not using a straw is the best thing we can do for the environment." That may be true, but coming up with eco-friendly straws that are sturdy yet flexible and can be used in hot and cold liquids is the best thing you can do for the planet and people with disabilities. Ditto for roping them into a discussion about what works for them.

One of Max's favorite weekend activities is stopping by Starbucks for a milk fix. Straight up. Cold. Starbucks is one of his happy places. I'd like to think it will continue to be welcoming to him, and all people with disabilities. 

Images: Sarah Miller, Flickr/courtesy of Starbucks

Monday, July 9, 2018

He sees palm trees everywhere

Dave has long had a thing for palm trees, mainly because he wishes he lived in California. When we first moved to the 'burbs fifteen years ago, the year I was pregnant with Max, he looked into whether we could possibly have one in our backyard. Hardy palms can grow in the Northeast, but once Max came along we never got around to it.

Max has caught Dave's palm tree fixation. This is because Max is planning to move to Orlando. Lately, he's seeing palm trees everywhere.

A few weeks ago, we were sitting in our porch when he started gesturing across the street and saying something I couldn't understand. It took a while for me to realize what he was pointing to: the giant weed trees on our street. It took a little longer for me to realize what he was saying: palm trees.

I had to laugh. This patch of woods typically gets to be an overgrown eyesore as the summer goes on. But there was Max, seeing palm trees.

"Yes, I can see how that looks like palm trees!" I said.

"It is!" he responded.

I wasn't going to argue. Especially because for the last few months, he's been telling us how much he hates our area. Because it isn't Orlando. At least he'd found something to appreciate.

After that, when we'd go out driving, he'd occasionally point out the window excitedly and say "palm tree!"

And I'd say, "Yes, that looks like a palm tree!"

It's kind of awesome to go through life thinking that you see palm trees everywhere. 

Friday, July 6, 2018

The Disability Blogger Weekend Link-up: put 'em 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: The report card I never thought I'd see

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, July 5, 2018

We did something right with this parenting thing

Unlike school, work and the lottery, you never really do know the results of your parenting skills. I mean, you try your best to raise your kids right and do well by them, but there's no measured way to tell how you're doing. Except for those moments when they do something that blows your mind and you think, we must be doing something right. Dave and I had one of those moments yesterday.

I'd emailed Sabrina's camp director to ask how she was doing. She wasn't entirely thrilled about the bunk she was in, plus it's been seriously hot and she doesn't do so well in the heat; I had to send her a fan. He called and said the heat had broken, and that he'd spoken with her and she told him she was happy. We talked about the upcoming visiting day, and I asked if Max might be able to get a golf cart ride. I explained that he had disabilities, and that although sometimes he gets tired walking around camp, he really just loves golf cart rides.

"I think that's possible—find me and I'll arrange it," the camp director said to me. "He has cerebral palsy, right?" 

I said yes.

He said, "I only know that because Sabrina told me, I'm glad we're talking because I meant to call you and tell you what happened." He proceeded to tell me that the other day, she had seen him, pulled him aside and told him that he needed to start a program for youth with disabilities at the camp. "That way, my brother can go here," she said. She noted that other branches of the camp have these programs; Max attends one in another state.

My heart caught. Sabrina and Max are like any siblings: they fight and get on each other's nerves. Sometimes they're sweet. She doesn't treat him particularly special, although she is there to lend him a hand when he needs it. A few weeks ago, for the first time Dave and I went out to dinner and left the kids at home with Sabrina, who helped Max get into his pajamas at bedtime. I was careful to make sure she was up for doing it, and she was—it was no big deal.

For the past year, Sabrina has been volunteering at a monthly temple service program for adults with disabilities. She started doing it as her bat mitzvah community project, and has kept it up. She also volunteers with The Friendship Circle, which offers programs for youth with disabilities—Max has been a regular there for years. I know of a lot of people who've become teachers for students with disabilities and therapists because they had family members with disabilities, and I've often wondered if that could be Sabrina someday. It was seriously amazing to find out that advocacy runs in her veins.

"Oh, and she knew that it would take money to pull off because she said to me, 'My parents know people with a lot of money and they can help!'" the camp director continued.

That made me laugh; I had no idea who she meant.

"It was one of my best moments as a camp director," he told me.

It was one of my best moments as a parent.

I'd actually had a conversation five years ago with someone who runs the camp's inclusion program. He basically said it wouldn't work for Max, because he needed life skills help and an assistant I'd have to find. He didn't sound positive about it. The program was geared toward more independent youth with disabilities who didn't have physical challenges. Max was turned away from a few camp programs for the same reason. I was disappointed, disheartened and frustrated, but didn't push back—if a camp didn't feel prepared to handle Max, I didn't want him there.

And then, a woman I met through the blog ended up starting a program at another branch of the camp. Max was literally one of the first campers admitted, and this will be his third year there. He is the only camper with cerebral palsy, and it hasn't mattered—they've made it work for him. See: Where there's a will, there's a way.

Sabrina's camp director and I spoke about the possibility of a program. He said he wanted it to happen, but the camp was at capacity. I noted that the other camp had built a bunk, and he said they were literally out of space. He felt confident he could get the funding, however, and joked that Sabrina could be in charge of development. He said they'd soon be working on goals for the camp, this would be one of them and that he hoped to figure it out.

I'd been in the car with Dave when I got the call. After I hung up, I told him the story.

"Wow," he said.

And he smiled and I smiled and we drove on, beaming with pride.

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