Friday, February 16, 2018

The Disability Blogger Weekend Link-up: let 'er rip

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: It takes a special needs parent to save the world

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

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

Thursday, February 15, 2018

What Pope Francis is doing for children with disabilities

There's been a photo circulating recently of the pope standing besides a little girl with Down syndrome and holding her hand as he reads from a paper. Mostly, this has been a Good Thing for children with Down syndrome and other special needs.

I have been charmed by Pope Francis ever since I read that shortly before he was named pope, he personally called his local Buenos Aires kiosk from Rome to say he'd no longer need a daily morning paper. When he went on to bring awareness and inclusion to children and adults with disabilities, I adored him even more. 

In November 2014, the Vatican held its first conference on autism and Pope Francis held a special mass for attendees and their families. "We need to break down the isolation and stigma that burden" people with autism spectrum disorders, he told the crowd.

In January 2015, a man with cerebral palsy who cross-stitched an image of Madonna Dolorosa with his feet and gifted it to Pope Francis during a visit to the Phillippines. The pope took time to chat with him, no small thing when you're in a teaming mass of people. The next month, Pope Francis joined seven young people with disabilities from around the world in a Google Hangout, telling them "each of us has a treasure inside." 

This past October, there was another Vatican-sponsored conference for people with disabilities. Pope Francis met with Bridget Brown, a self-advocate who has Down syndrome. As she'd written to him, "The world needs to know that I don't 'suffer' from Down syndrome. I have a a full and wonderful life, and I am filled with joy to be alive."

As for that little girl with Down syndrome seated beside the pope, that happened back in October, when Special Olympics Chairman Timothy Shriver had an audience with The Pope about what he called the "inclusion revolution." There were several Special Olympics athletes present, including four-year-old Gemma Popili from Rome. She presented the Pope with a pair of red Special Olympic sneakers. And then, he invited her to sit beside him. 

Pope Francis isn't doing this out of pity. For one, he is generally welcoming to children. Years ago, a boy wandered over to him during Family Day at the Vatican. The child greeted him. He checked out the cross hanging around his neck. He would not leave the stage, and the pope let him hang nearby.

In parts of this world, children and adults with disabilities are ostracized. Even here in the U.S., they can be other-ized and treated as if they are not a full-fledged part of society. What Pope Francis seems to be doing is pointedly embracing, figuratively and literally, children and adults with disabilities. 

Sure, photos like the one of the pope and Gemma can be misinterpreted—it's been incorrectly reported that she wandered up to him during a papal service and he allowed her to stay by his side. But the more people see His Holiness interacting with children with disabilities, the more some will understand that our children are as worthy of being appreciated, admired and included as any are.

Wednesday, February 14, 2018

Nine little words that can make a parent's day

"I put a new zipper pull on Max's coat," the email said. I read it on the train last night as I was en route home from work, and it made me seriously glad.

Max's occupational therapist at school had written it. He struggles to grasp zippers, and we'd had a piece of fabric attached to the one on his jacket to make it easier for him to manipulate. More often than not, as we're zooming to get out the door (we are always zooming, in our house), we end up doing it for him. Or he says "Nooooo!" and barges out the door. Because: teen.

As any parent who has a child with disabilities know, we carry a looooong list in our heads of Things To Worry About My Child, right along our Things To Do For My Child list. Often, they all merge into one overwhelming list and you end up walk around with this undercurrent of guilt about things that you could be doing about your child to help him but haven't. Yet.

The therapists in Max's life have always helped relieve my anxiety. They enable Max and help me and Dave enable him, too, with things big (speech) and small (grasping a toothbrush). Although even the small stuff is a big deal. Max's OT at school has been working with him on dressing skills; it is an ongoing effort on everyone's part. Flexing his arms to slip on a jacket does not come easily to him. Grasping an itty-bitty zipper is also a real challenge.

The zipper pull solution was especially simple: a butterfly clip, the kind often found in offices. Once again, I felt flooded with gratitude for the support we get. Fifteen years into parenthood, there are times when I still feel the weight of the world on my shoulders for making sure Max succeeds in life. Last night, staring at the clip on his jacket, I once again felt a little less alone. 

Tuesday, February 13, 2018

I love you more than sushi: nope

Yesterday, Max came home from school with this lovely doily. I found it in his backpack after he'd gone to sleep.

Among the stuff that rates higher than me on his list of beloved things:

1) Mac 'n cheese
2) Friends
3) Daddy
4) Sushi
5) Pizza

No, let me correct that. I did not make it onto the list at all, although it would have been challenging to squeeze me in beneath "pizza."

I am not surprised that three out of five items are foods, because Max loves to eat. Loooooves.

Granted, fire trucks and Jamaica did not make it onto the list, either. So I am in good company.

Maybe it is teen boy-ish to be above declaring your love for your mom? On a doily?

When he woke up this morning, I asked what was up with the doily. He explained it's because of his upcoming move to Jamaica with Dave and Ben. As in, he is preemptively distancing himself from me.


Monday, February 12, 2018

It takes a special needs parents to change the world

Last weekend, I got a notice about a new petition. Cynthia DeStefano, who has a daughter with disabilities was asking Costco to get Caroline's Cart, a modified shopping cart that comfortably fits and supports those with disabilities up to 250 pounds. The cart was invented by two parents whose daughter, Caroline, has special needs.

Kroger's and other supermarkets have them; Target got them a couple of years ago, after a Target team member who has a child with special needs suggested it to Store Operations. (Here's a pre-written letter if you'd like to contact your store about getting one.)

"Taking Gia out with me means so much," writes Cynthia on her petition. "When stores make that easier, it means I never have to exclude her. Something as simple as these modified carts makes a world of difference to special needs families." She noted, too, that Costco's adoption of these carts would encourage more big-box stores to do the same.

As I signed the petition, I had two reactions:

1) I am continuously amazed by the power of the web and the power of parents to make life better for our children.

2) Why does it always has to be parents of children with disabilities and adults with disabilities asking for change?

I mean, shouldn't it be stores' jobs to ensure that customers of all abilities can comfortably shop there? This is not feasible when you're trying to simultaneously wheel a shopping cart and a child's wheelchair. Or you're forced to prop up your child in the cart's with winter jackets to support him, as we used to have to do with Max when he was a tot and his core wasn't yet strong enough for him to sit independently.

Thanks to the explosion of social media over the last several years, parents have been speaking out about getting programs, play spaces, dance programs, after-school activities, you name it to include our children—at times, shaming them into it. (I'll never forget this story about a gym that wouldn't host a birthday party for a little boy with Down syndrome.) Obviously, this has been good for our kids. At the same time, it makes me hyper-aware of having to always push, push, push for our children's rights to participate in activities, enjoy the same fundamental joys of childhood as their peers without disabilities, and basically live their lives.

On occasion, it's easy, like that time the head of a local dance school unhesitatingly welcomed Max for tap lessons (he's since moved on). When we don't face barriers, when people instantly say "Sure!" to our children, it's always a wonder. Because often, we're dealing with exclusion; over the years, Max has been turned away from camp, programs and even a school where they could not—or would not—accommodate him.

We have made progress.

We have a long ways to go.

As I write this, Cynthia's petition surpassed its original 75,000-signature goal, and was nearing 150,000. My money's on Costco getting these carts; they are a pretty conscientious company (Canadian Costco has a multi-year accessibility plan posted online), and I'm betting this situation just never occurred to them. It seems like they and other companies would do well to have a designated disability task force if they don't already have one, including people with disabilities. It would also benefit them to hold focus groups with parents of children with disabilities and people with disabilities, too.

As parents of children with disabilities, we're here to advocate for sons and daughters who can't yet do that for themselves, and to raise awareness for a minority that many people aren't mindful of unless they have a disabled family member or friend. And so, we will keep right on knocking on doors, knocking down doors, shattering barriers and leaping over tall buildings in a single bound.

I will do anything possible to make this world better for my boy, just as Cynthia is doing for her daughter, just as so many parents do for their children. But how great would it be if others laid out welcome mats for our children instead of us regularly having to ask for them.

Friday, February 9, 2018

The Special Needs Blogger Weekend Linkup: sharing is caring

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: 5 things the 2018 Gerber Baby reveals about how people view children with special needs

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

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

Thursday, February 8, 2018

5 things the 2018 Gerber Baby reveals about how people view children with special needs

Lucas Warren, 18 months old, made history this month when he became the first tot with disabilities to be chosen as the Gerber Baby. Since the company was founded in 1928, parents have been sending in photos of their cutie-pies. Eight years ago, Gerber began an official photo contest for a "Spokesbaby." Lucas's mom, Cortney, posted this photo of him in a bow-tie on Instagram with the contest tag; Lucas proceeded to beat out some 140,000 other tots for the honor.

Like previous winners, Lucas will appear across Gerber's social media channels in the coming year. He's also won $50,000, and hopefully won't blow it all on apple juice and toy cars. Here's what the choice of Lucas as the new face of Gerber says about how people view children with special needs:

1. Perspectives are changing

Even ten years ago, a Gerber baby with Down syndrome might not have happened. But more people understand that children with Down syndrome and disabilities are children first, with a smile as winning as any. Gerber's choice will help further spread that message. "The world is changing," one young woman I know commented on Facebook. Yes, it is.

2. And there's a new meaning of diversity

For decades now, companies have understood that it's important to have children and adults of different races serving as the faces of their company and, more recently, people with a variety of gender identities. In recent history, Target, Nordstrom's and other big stores have included children with Down syndrome in their ads. And now Gerber has also acknowledged, in a supremely public way, that diversity includes children with disability; hopefully more companies will follow their lead. Our daughters and sons with Down syndrome, cerebral palsy, autism and other disabilities deserve to be represented in ads, on TV, everywhere—same as their peers.

3. Perspectives haven't yet changed enough

Maybe someday, a baby with Down syndrome winning a cute baby contest will not make worldwide headlines. That'll actually be a good thing because no big fuss would mean it would be no big deal—as in, it would be an ordinary occurrence for tots with disabilities to be as included and celebrated as their peers without DS. Right now, though, the fact that Lucas has Down syndrome and won the contest has appeared in almost every single headline. Because yes, this is a Very Big Deal.

4. Parents of kids with Down syndrome are feeling validated

Beth Ann (beppa_1), mom to a boy with DS, summed it up best in an Instagram comment: "Mommas all over the world are crying happy tears because you have seen what we do."

5. Perfect children come in many flavors 

Since forever, the baby on Gerber food jars has been one cherubic-cheeked, cowlicked-haired tot—an iconic cuteness. Their logo likely isn't changing, but little Lucas is showing the masses another kind of perfectly adorable face. Most commenters on social media gushed about how handsome and cute he is—a new icon to adore.

Wednesday, February 7, 2018

When parenting fails, call in backup

Max is still planning to move to Jamaica, a situation I somewhat consider a fail on our part. I've tried my best to reason with him—he loves his school here, Daddy and Mommy have jobs, it costs money to move and get a house. He has answers: There is school in Jamaica; Daddy can work from Jamaica, I can stick it out here with Ben and Sabrina. He dodges the issue of paying for it.

Dave, aka Marshmallow Daddy, has been indulging him. Which explains why our calendar says, on Tuesday March 20, "Fireman Max moves!" (Max is kindly waiting to go until after his sister's bat mitzvah in mid-March). This also explains Dave and Max's weekend trips to Home Depot, where Max has been picking out appliances for his new home. So far he's chosen a fridge ("Samsung!" he repeatedly tells me—he loves the new smart model that enables you to order groceries), a microwave, a range, a washer/dryer and a granite countertop. He's also discovered he can browse for such items.

When he's getting dressed, he'll note whether or not the clothing will be coming with him to Jamaica. He tells me he's already informed his teachers. He's got this whole thing planned out, in his mind, anyway.

"It's disgusting here!" Max says pretty much every time he comes in from outside. I don't disagree, except he's been saying the same thing about our house, too.

I think having fantasies are healthy and good; life would be pretty dreary if we had nothing to dream about. But I am pretty sure Max thinks this is real, and that's what concerns me. So this weekend, I roped in backup: his longtime, super-matter-of-fact-practical-pants speech therapist.

Things didn't start off so well.

"It's disgusting here!" Max announced as she walked into our house on Saturday and took off her boots.

She wasn't sure what he'd, said so I translated.

"Max, I can't hear that 'd'—try that again, dis-gus-ting," she said, modeling the correct tongue movement. They practiced that again and again. Super.

Toward the end of their session, I told her about Max's anticipated move.

"I just don't think it can happen," I said, and Max shook his head vehemently.

"Max," she said, "you can't move to Jamaic, you don't have a house."

"I do!" Max announced, triumphantly, and we opened photo on his iPad of the dream house that he'd chosen.

"Max, it cost a lot of money to buy a house," she pointed out. "Your Mommy and Daddy had to spend a lot of money to buy this house. Where are they going to get the money from?"

And Max stopped and thought and had nothing to say.

Last night, I got home as the music therapist was finishing up Max's session. Max has been trying to get her to compose songs about his new home, Jamaica, and I'd told her we were trying to be realistic.

"I had Max write a song about what he loves here," she told me.

"And he did it?!" I asked, incredulously.

"Well, it was mostly me," she said. But Max wasn't having it: even when she mentioned his favorite fire station he said, "Oh, it's OK."

Some good has come of this fixation: Max is learning to make a case for what he wants.

"You and Daddy moved to this house," he recently pointed out when I was telling him he couldn't move.

"Yes, but we moved from 20 miles away," I said. "Jamaica is 1500 miles away! And your family wouldn't be near you!"

"First home!" he continued. I knew what he meant: This was our first home. He, too, deserved to have a first home.

I have a chat coming up this week with his teachers, and I'll be asking them what he's said to them. While I do think he needs to keep it real and we have to help with that (the Home Depot jaunts have got to stop), this is far from the worst problem in the world. Maybe Max will calm down once the weather turns warm. Meanwhile, I'm trying to plan a spring getaway; Max insists he doesn't need to go because he's moving.

Tuesday, February 6, 2018

14 children's books with great messages about love

They won't cause cavities or a sugar high, yet their insides are sweet and satisfying. I'm talking about these 15 great new (and new-ish) books about love, perfect for a Valentine's Day gift or anytime gift. They're filled with messages about making connections, adoring others and being adored and embracing people (and monsters) of all kinds. While they're geared toward non-readers and emerging readers, they're delicious for children of all ages—and their adults.

Colors of Love by Tina Gallo
Having breakfast with your family in a sky-blue kitchen, watching fireworks in a purple sky on a rooftop with friends: we experience love in diverse ways, as this book explores in glorious color.

Love by Matt de la Peña and Loren Long
Love can be fun (a police officer plays with kids enjoying a park's sprinklers). Love can be tender (a grandpa fishes with his grandson). Yet it can also be scary(a child cowers beneath the piano as parents fight). With evocative illustrations, this meditation brings love's many meanings to light and its powerful effects on us all. This new bestseller is one you'll want to read again and again. 

This is an important addition to any child's library, because it's about the greatest love of all (cue Whitney Houston): learning to love yourself, and what makes you unique. From the author of "On The Night You Were Born," this keeper celebrates different abilities, interests and personalities, with beautiful drawings in chalk, watercolor and pencil. The opening words set the tone: "We're not all the same. Thank goodness, we're not. Life would be boring, and I mean—a lot. And so, when we're born, we're supplied at the start, with our own bells and whistles to set us apart."

Love Monster by Rachel Bright
Poor googly-eyed, sharp-toothed monster doesn't fit in with his cuddly peers, so he leaves Cutesville to find the love of his life (wisely bypassing Tinder). It's hard out there and he gives up, except as he's about to head home something amazing happens. This book has lively illustrations and meaningful messages: being different is OK and everyone deserves to be loved. Amen!

Worm Loves Worm by J.J. Austrian
When two worms fall for each other and decide to wed, their friends go all out with the wedding plans. But, they tell the couple, there can only be one groom and one bride. What's a pair of forward-thinking invertebrates to do? This seemingly silly book has a happy ending that reinforces all you need is love, and a wedding planner. OK, not the wedding planner. 

Everyone's favorite serial feline is skeptical about Valentine's Day, until he realizes all the cool cats there are in his life and decides to make cards for them. Thing is, he forgets one particularly special one. The book comes with 12 cards, stickers and a pull-out poster.  

Hug Machine by Scott Campbell
Little dude walks around hugging like it's his job, everything from a fire hydrant to a whale, fueled by pizza slices. "No one escapes the Hug Machine!" he declares. But then, he discovers that as great as it is to give, there's nothing better than receiving from... ah, no spoiler alert here!

Heart to Heart by Lois Ehlert
This author is a favorite in our home—her whimsical, playful books are fun to flip through. Her latest one is similarly irresistible, with rhymes centered around various foods like picture puzzles: "I'm [cherry] when I cu / [olive] u, n it shows / My [heart] starts [pumpkin] / from my head down [tomatoes]." If you don't appreciate puns, this book just might make you a convert. Or not.

The Valensteins by Ethan Long
Usually, the witch, the mummy and other members of The Fright Club scare people. But on this night, Fran K. Stein is making—wait, what?—a valentine! Even more terrifying: when two people love each other, the crew learns, they kiss on the lips. "EEEWWW!" they declare. Next thing you know, Fran K. is crushing on a girl who resembles Bride of Frankstein and he gives her the valentine. This book hilariously plays off kids stereotypes about love.

Click, Clack, Moo I Love You! by Doreen Cronin and Betsy Lewin
Little Duck is throwing a Valentine's party in a barn she's decorated; when guests come in, she hands each a handmade heart. A little fox, hearing the music, decides to crash. Panic ensues—a fox! At a farm! Then Little Duck hands him a heart and...swoon. The latest edition in this popular series has a nice take on not judging others by their appearances. 

Vivid illustrations from the original beloved children's book come together in a celebration of love: "You are the apple of my eye; you make the sun shine brighter; you make my heart flutter." It's simple and cute; there's no story here, just sweet sentiments.

Elephants in love do the goofiest things: they hide behind a tree (not very effectively) when the object of their affection is nearby, stare aimlessly into the clouds, try to eat well but polish off the cheesecake. Sound familiar? This adorable book lets little ones in on what it's like to crush on someone—and shows that love is worth waiting for. 

Words and Your Heart by Kate Jane Neal
OK, technically this book isn't about love but about how words affect our hearts. They can inspire and cheer others up, but they can also hurt. The simple message—using words to look after each others' hearts—is easy for kids young and old to understand, and a great conversation starter. 

I Love You Already! by Jory John and Benji Davies
Bear just wants to chill at home, except his neighbor, Duck, hauls him out then proceeds to pepper him with questions. Concerned by Bear's terse responses, Duck just isn't sure he's liked, to which Bear repeatedly insists "I love you already!" The truth comes to the test when Duck gets into a situation, and Bear is there for him. Aww. 

This post contains affiliate links.

Monday, February 5, 2018

10 things in life that are most meaningful to kids (according to kids)

Recently, a doctor who cares for children with life-limiting illnesses asked some what they've enjoyed in life and what gave it meaning. He then posted a string of responses from the kids, ages four and nine, on Twitter. As Dr. Alastair McAlpine, a pediatrician who works for the nonprofit PaedsPal, noted, "NONE said they wished they'd watched more TV, NONE said they should've spent more time on Facebook."

Their answers are a reminder to us all of the simple stuff that matters most to our children. So the next time you're worried that you're not doing enough activities with your kids or taking them on enough trips or buying them enough of this or that or yada yada concern, refer to this heartfelt list.


"I love Rufus, his funny bark makes me laugh."
"I love when Ginny snuggles up to me at night and purrs."
"I was happiest riding Jake on the beach."


"Dad mustn't worry. He'll see me again soon."
"Hope mum will be ok. She seems sad."
"God will take care of my mum and dad when I'm gone."


"ALL of them loved ice-cream," reported Dr. McAlpine.


"All of them loved books or being told story, especially by their parents," Dr. McAlpine tweeted:

"Harry Potter made me feel brave."
"I love stories in space!"
"I want to be a great detective like Sherlock Holmes when I'm better!"

True friends

"Many wished they had spent less time worrying about what others thought of them, and valued people who just treated them 'normally,'" said Dr. McAlpine:

"My real friends didn't care when my hair fell out."
"Mane came to visit after the surgery and didn't even notice the scar!"

The beach/swimming

"I made big sandcastles!"
"Being in the sea with the waves was so exciting! My eyes didn't even hurt!"


A virtue, says Dr. McAlpine, valued by children above all others:

"My granny is so kind to me. She always makes me smile."
"Johnny gave me his half sandwich when I didn't eat mine. That was nice."
"I like it when that kind nurse is here. She's gentle. And it hurts less."

People who made them laugh

"That magician is so silly! His pants fell down and I couldn't stop laughing!"
"My daddy pulls funny faces which I just love!"
"The boy in the next bed farted! Hahaha!"

Toys and superheroes

"My Princess Sophia doll is my favourite!"
"I love batman!"
"I like cuddling my teddy."

Family time

"They ALL valued time with their family. Nothing was more important," noted Dr. McAlphine:

"Mum and dad are the best!"
"My sister always hugs me tight!"
"No one loves me like mummy loves me!"

Dr. McAlpine's final take-home message: "Be kind. Read more books. Spend time with your family. Crack jokes. Go to the beach. Hug your dog. Tell that special person you love them. These are the things these kids wished they couldn't done more. The rest is details. Oh... and eat ice-cream."

Friday, February 2, 2018

The Disability Blogger Weekend Link-up: Do it

What to do if you're new here

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

Like this: What were your biases about people with disabilities before you had a 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, February 1, 2018

What it's like to be a mom: fill in the blank!

Sometimes, when I think about all that I do as a mother, I feel _______

[adjective]. I mean, every day I wake up at _______ [insanely early hour]

and spend the next _______ [number] minutes attempting to get my family out

the door, as everyone grumbles _______ [surly sound] and nearly forgets to take

their _______ [plural noun] with them. This basically happens every single

morning, is if they haven't done this _______ [high number] times before!

Throughout the week, I will attempt to do _______ [insanely high number] of

tasks to ensure that my children and home are _______ [adjective]  while

ignoring my own needs and barely finding time to _______ [synonym for "pee"].

I'll fill out forms for _______ [activity],  make a batch of _______ [food] in the

Instant Pot, shop at _______ [store] for all their necessities, help them with

_______ [noun], nag them to get off their _______  [addictive tech device]

and constantly clear the _______ [bad word] crumbs beneath the kitchen table.

Oh, and I'm not even counting the _______  [insanely high number]  of

things that I stay on top of: making sure they have  _______ [type of clothing]

that fits, checking that we have enough _______  [noun], reminding the kids

to clean their _______ [adjective] rooms and do their _______ [noun]

homework, plus keeping track of where everyone has to be and

when _______! [term of  exhaustion] Not to mention dashing off to the

pediatrician whenever someone's _______ [body part] hurts, attending

the _______ [adjective] parent-teacher conferences, carpooling to ________

[location], organizing birthday parties, coordinating _______ (adjective)

family holiday celebrations and OMG! [omg!] Well, now I am all riled up

and need a glass of _______ [alcoholic beverage]!  _______ [bad word],

one of these days I'm going to run away to _______ [exotic locale] and

that'll show them! Because then nobody will ever be able to find the

_______ [basic household object] and they'll soon run out of clean

_______ [type of underwear] and forget to do ALL THE THINGS and go

to ALL THE THINGS and it won't even matter because there won't be

anyone to drive them to ALL THE THINGS and meanwhile they'll likely

resort to eating  _______ [brand of cat food] for meals and boy,

are they gonna miss me!  _______!!! [sound of victory]

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