Thursday, June 30, 2016

Two teens create a therapy toy for kids with cerebral palsy

This guest by is by two recent high school graduates who created, as part of a school project, a rather amazing and very unique therapeutic toy for children with cerebral palsy—although it would work well for children with autism, Down syndrome or any who have fine-motor skill challenges. 

Hi, all! We are Noah Saldaña and Devin Lewtan, recent graduates of Beaver Country Day School in Chestnut Hill, a town just outside of Boston. We would like to tell you about a product that we have been developing for the past year: a vest that specializes in helping children with cerebral palsy practice the fine-motor skills associated with getting dressed.

The inventors, at graduation
Our baby, named the Skills Vest, was first conceived in Winter 2014-15 at NuVu, an innovation school geared around multi-disciplinary, collaborative projects. Founded by graduates at MIT (utter geniuses), participating middle and high school students are taught the creative process through the production of prototypes. NuVu is structured in two-week studios led by full-time coaches (the previously mentioned geniuses) and guest experts.

The term that we spent at NuVu was “health” themed; everything within the realm of nutrition, medicine, disease and disorders was explored. Multiple studios addressed disabilities. These included Hacking Wheelchairs, in which students made devices for wheelchairs, and Trigeminal Neuralgia, in which students designed products for those suffering from a rare disease that affects facial nerves. We were assigned to work in Easing Cerebral Palsy: Clothes.

As friends of a fellow classmate at Beaver with cerebral palsy, we had prior experience with the disability. Devin has been coaching basketball to children with special needs for over six years, which sparked her interest in occupational therapy and early childhood development. Noah has heard numerous stories over the years from his sister who is studying physical therapy, which led to his fascination with the topic.

Regardless of our familiarity, it was obvious that we had a lot to learn. With fifteen other students, we brainstormed, researched and sketched possible project ideas. We learned that cerebral palsy is a congenital (present from birth) disorder of body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It also impacts fine motor skills, gross motor skills and oral motor functioning. We took this information into account when designing our vest.

Clothing that contains zippers and buttons is difficult to put on for some kids with cerebral palsy, as it requires fine motor skills. We wanted kids to have a fun way to practice getting dressed! We analyzed the skills needed to use zippers and buttons, and created games that allow kids to practice these skills. We brainstormed the different skills associated with buttons and zippers and came up with this diagram:

Our vest would not only allow kids to practice the basic motions behind zippers and buttons, but would also be fun and entertaining (and extremely fashionable)!

With the help of our awesome coach Rosa Weinberg, a full-time teacher at NuVu, and Javier Leal, an architect from Monterrey, Mexico and the founder of Mas Libertad Menos Barreras (a nonprofit that provides design services for low-income families with children with cerebral palsy in Mexico), we created our first prototype of the vest by the end of our first two-week studio.

We went for a pegboard-like design allows customization for and by the child wearing it. The toys on our vest are attached through our own original mechanism It is a four-part system using three pieces of wood and a 3D printed object. This mechanism allows for the toys to be rearranged.

We made the vest out of purple felt we found in the materials bin at NuVu Studio; the material could be easily laser cut and sowed. It was sized for kids ages 5 to 8. The toys on the vest were made of laser-cut wood and then painted. Each toy was designed with a different skill in mind, based off of pre-existing occupational therapy toys. Since the toys are attachable and detachable, they can be placed wherever is most convenient and beneficial for the child. Game levels can also be customized; if a child masters the beginner’s games, they can “move up” a level and attempt something more advanced.

Here’s an example of what a toy does: the slider (the green and yellow one furthest on the left of the vest below) is made to help practice the motion behind moving a zipper up and down.

As you can see, the vest was quite hideous. Yes, it addressed the specific skills we focused on in our research, but let’s be honest...who would want to wear this? But this is what NuVu trained us for: NEVER BE BOGGED DOWN BY UGLY AND UNFASHIONABLE FIRST PROTOTYPES!

A few of the projects created in the first Cerebral Palsy Studio were selected by Javier  to be pushed forward in a second studio, including ours. We couldn’t be happier to be able to working on this project for another two weeks! Other projects chosen: The Fashionable Lift Vest (a fashionable alternative to lifting issues), Uplift (a mobility device that makes it easier for caretakers to maneuver, lift and rotate a child in tight spaces) and Arte Para Todos (a drawing and writing tool for kids with cerebral palsy). These sparked the idea of a field test in Monterrey, Mexico. They said the location was chosen because of Javier’s work there, but we still believe it was because of the fresh guacamole.

We worked for an additional two weeks at NuVu, modifying and improving the design of the vest. We made the toys more intuitive and shifted to a more visually appealing theme of farm animals. We even made the vest green and brown to represent grass and dirt. Our newer iteration was irresistibly cute (we might be biased…) and received flying marks from Javier and Rosa! We worked with local children in Boston with disabilities similar to cerebral palsy. It was an eyeopening experience. This was our first real field work and it gave us a great sense of what was working and what was lacking. It was a huge success and we returned to Nuvu Studios with our adrenaline pumping and our heads high.

After this field test, we redesigned certain toys (such as the barn and the pig) and designated the more difficult toys as “advanced” toys to provide variety and challenge. This is where we left off before going to Monterrey, Mexico, a few months later:

Last summer, we flew with Coach Rosa to Monterrey, Mexico with a group of students. There, we teamed up with industrial design students at Monterrey Institute of Technology (Instituto Tecnológico, for those who know their español), and continued to make new iterations of the vest. We worked for a week and then brought our vest to Nuevo Amanecer (translation: A new way to begin), a center for children with cerebral palsy. A young fellow named Abraham test it.

With little to no explanation, Abraham picked up the toys and went at it! He was giggling, laughing and most important, was intrigued by everything that he picked up. Everything was intuitive and entertaining. Instead of playing with the toys after we placed them on the vest, Abraham grabbed as many toys as he could get his little hands on. He shrieked and smiled as he played with the jumping sheep and piggy bank.

Abraham wasn’t the only one having a blast. It was amazing to see him play and understand our thought process, no explanation necessary. We could never have predicted such a positive and inspiring reaction. If we weren’t passionate about the vest before this point, you can be sure that we were in love with it after Abraham give us the two big thumbs up (in his own way).

In the final weeks of our high school careers, we came back together to take the vest where it is supposed to be: everywhere. We have been reaching out to local toy stores in the hopes of retail, occupational therapy centers and bloggers (like the very nice Ellen!) for valuable feedback. We have considered starting a Kickstarter for this project. We’re looking to get a patent and find a manufacturer—so if you have any interest in that or ideas, or just want to reach out to us, email us at

The Skills Vest has changed our lives in so many ways. We have learned an incredible amount about cerebral palsy, the innovative process and children in general. It’s helped us become great friends, and collaborate on something that can truly help people. Most importantly, we have learned that most key part of every kid's childhood is their happiness.

The Skills Vest means so much to us, and we hope that it will change the lives of others, too.

Wednesday, June 29, 2016

7 reasons my baby is laughing

Babies are very entertaining, when they are not crying, spitting up or refusing to sleep. Just watching Ben examine objects and experience various sensations is totally amusing. If we're out and the wind is strong or you blow at his face, he sticks his little tongue out to taste it.

Ben also has a tendency to crack up at the most seemingly random things, which makes us all laugh. You know that Tumblr Reasons My Kid Is Crying? Without further ado, I bring you Reasons My Baby Is Laughing.

Reasons my baby is laughing: Paper plate

Reasons my baby is laughing: Doodoo

Reasons my baby is laughing: Bang! Bang!

Reasons my baby is laughing: Nasal spray

 Reasons my baby is laughing: Watermelon

Reasons my baby is laughing: Peek-a-boo

Reasons my baby is laughing: Incoming! Mommy!

Tuesday, June 28, 2016

The joys and challenges of a clingy child

This guest post is from Amy Silverman, author of the new book My Heart Can't Even Believe It: A Story of Science, Love and Down Syndrome. She lives in Arizona with her husband, Ray, and daughters Annabelle and Sophie, who has Down syndrome. 

What my daughter lacks in gross motor skills, she’s always made up for in tenacity. Sophie has Down syndrome. She didn’t walk till she was 3, but from the time she did she’s been heading my way, starting long before dawn on most mornings. 

I’m an early-to-bed-early-to-rise girl. Particularly as a working-outside-the-house mom, the hours between 4 and 6 a.m. are sacred, a time to slip out of bed quietly and settle at the kitchen table with a laptop, coffee and a dog or two at my feet. No humans. Bliss.

For years, now, no matter how careful I am not to knock over the toothpaste or slam the hall door, within moments after I’ve hit the kitchen, I hear a familiar shuffle of little feet and a tentative, "Mama?"

"Oh no, Sophie," I say as soon as she appears in the doorway. "It’s way too early. Go back to bed! You need your sleep."

By this time she’s made her way to my side, shaking her head as she burrows it under my arm for the first cuddle of the day.

"If you up, I up."

If I’m up, she’s up. I sigh and remind myself that I should be grateful for this extra time, not so selfish. Sophie and I will part company in a few hours—she’ll go to school, I’ll head to the office—and evenings are hectic. 

Still, I crave my own time. 

Some mornings, she heads back to bed. Others, she finds her way onto my lap, demanding cuddles, Carnation Instant Breakfast, eggs she can crack into the bowl herself before I prepare them. I shoo her off my lap and hobble old-lady style to the fridge to get the ingredients for scrambled eggs, humming the tune to "My And My Shadow."

Both my kids love rituals, and I love this about them. Sophie’s older sister, Annabelle, has a sentimental attachment to our annual family beach trip, to our Hanukkah and Christmas traditions, to the house she’s lived in since she was born.

Sophie has a sentimental attachment to her thumb, something that worries me more now that she’s officially a teenager. Mostly, she has an attachment to me. It’s not that she’s clingy, per se. When we are out together—shopping, get our nails done, at family gatherings—she’s social, engaging with others. It’s more than she has these mother/daughter rituals. Some of them crack me up, even when they make me feel claustrophobic.

For example, Sophie insists on sitting directly behind me in the car. (She’s still way too small to ride up front, to her disappointment.) If I’m driving, she sits on the left. If I’m the passenger, she must be on the right. This can sometimes get a little complicated, but is not typically a big deal.

Every night, she waits for me so we can put on our pajamas together. She asks me, "Nightgown or top and bottom?" and plans her own sleep outfit accordingly, so we match. She brings hers into my room and spreads it out on the bed, waiting until I’m ready so we can undress together.

"Ahhhh," she sighs heartily, every time. "Don’t you just love the feeling of taking off your bra at the end of the day?"

I do. I laugh and nod. Sophie is getting her own set of breasts, and she’s very proud of them. Once we are in our pajamas, we sit in the same spots on the couch (dictated by Sophie) and watch TV shows she’s chosen (her favorites are Dance Moms and Project Runway) and "cuddle to sleep."

Usually within minutes, she’s limp and drooling, sleeping so hard it’s almost impossible to wake her to move to her own bed, unless she’s won her daily negotiation to sleep in mine. In that case she rises happily and climbs into the king-size bed in between spots reserved for my husband and me, head on a satin pillowcase, hand wrapped around her favorite Piglet toy.

She’s so sweet, sleeping peacefully alongside my spot in the bed. But looks are deceiving. By midnight Sophie’s a whirling dervish, kicking her legs, flailing her arms, a tiny Ninja warrior in her sleep. And not so tiny anymore.

"Whatever you do, keep them out of your bed," I warn mom friends with kids younger than mine. "I haven’t slept since I was pregnant!"

And yet, most nights, I give in. When I don’t, my husband does. Sophie has her ways. Mostly, it’s good, old-fashioned nagging. Often I’m reminded of Olivia the pig, one of her favorite book-turned-television characters, and her mother, who ends many days by telling her child, “Olivia, you really wear me out. But I love you anyway.”

I try to stay up—there are dishes to wash, laundry to sort, office work left undone—but I never can. So I slip into bed beside Sophie, and drift off to sleep.

In the past few months, Sophie has started to sleep late in the mornings, and I wonder if things are all about to change. Will the hormones kick in, will she call me a bitch, refuse to let me touch her? Some days all I want for Sophie is for her to be "normal"—to grow six inches and 30 IQ points—and I know she wants that, too. As she grows older, she wants it more and more.

I spy on other 13-year-old girls—at the mall, at ballet class, from the carpool lane when I drop Sophie off at school—and marvel at how grown up they are, so self-assured and independent. Young adults. I get flashes with Sophie—her birthday request for "high heels," her love of sushi—then I catch her with her thumb in her mouth at a party and I’m pulled back to our reality.

The feelings ebb and flow but the truth is that Sophie is growing up, in her own way. Maybe someday she won’t want to sleep in my bed at all. At night, as I pull the covers up around both of us, I realize that in some ways Sophie and I are both truly content. I try to live in the moment. Or at least get some sleep, since morning’s not far off.

Amy Silverman is managing editor at Phoenix New Times and a commentator for KJZZ, the National Public Radio affiliate in Phoenix. Her work also has appeared on the radio show This American Life and in The New York Times.

Monday, June 27, 2016

The road taken

Something amazing happened on our very own street over the weekend involving Max, a bike and a left turn.

Sometimes, I trot next to him as he cruises around the neighborhood and he thinks it's really funny to speed up and make me go fast. Mostly, he pedals up and down our street, back and forth and back and forth. He can do this for a really long time.

So I was sitting on our porch as he biked and all of a sudden I didn't see on him on the street. "Max!" I shouted, nervously. "Yeah!" he said. I spotted him a few driveways over from ours and headed over.

One of our neighbors has a long gravel driveway, and Max had decided to go down it.

Maybe this doesn't seem like a big deal, but it was. For the first time in Max's bike-riding career, he had veered from his usual path and set off to explore a new one—of his own accord.

Being curious and adventurous are great assets in life. For years, though, Max's aversion to noise and crowds meant he was adverse to checking out new places, new restaurants, new anything. Those sensory issues have abated and now he's game to go exploring with Dave. He just doesn't often get the chance to do so on his own, because Dave or I are always with him.

There Max was, happily rolling along unfamiliar territory. It was exciting to see, and also made me realize that we need to figure out more ways to let Max safely explore on his own. He's not yet a boy who can, say, cruise around the mall with friends, but I could set up a hangout with one and keep my distance behind them. He needs to gain independence. I need to let go.

Sabrina would agree; I can be overprotective of her, too. We were at the zoo the other day with one of her friends, and the girls went ziplining. Sabrina soared over my head first. I saw her safely land, but a few minutes later, she hadn't met me in the waiting area. "Sabrina!" I shouted. "Sabrina!" A minute later, she appeared, embarrassed that I'd been calling for her. Turns out that it was a bit of a walk back.

Children develop, and parents need to as well. Giving Max more freedom is a little challenging and a lot unnerving—for me. But it needs to happen, and I know it.

Max gave me a great big smile when he saw me. And then, he turned around and went back again.

Friday, June 24, 2016

The Special Needs Blogger Weekend Link-up: Hello, summer!

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: Mothers against the month of June

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, June 23, 2016

People who insult those with disability: Is an apology really enough?

I have been chubby for most of my life—"pleasantly plump," as my friend Faith used to say—and over the years, occasional insults have been lobbed at me. "Lose some weight!" said a sneering teen walking down Eighth Avenue in New York. "Yer fat!" muttered some man as I went to hail a taxi with a colleague in the East Village. "She's cute but she's pudgy!" remarked a guy to his friend at the bar I was at with friends.

I am comfortable with my body, yet I still recall these insults. They are hard to forget. I'm thinking of this in light of the recent brouhahas in the disability community. People with intellectual disability were mocked for the way they move and live. They were referred to as "retarded" and "'tard" and derided for riding a "short bus." I can only imagine how that must have felt to people with ID, and how it will haunt them.

There have been apologies.

First, Gary Owen—the comedian who had a demeaning skit about people with disability in his Showtime special I Agree With Myself—met with a group of four Special Olympic self-advocates in Washington, D.C. They included Julie Petty, Loretta Claiborne, Ricardo Thornton and Frank Stephens, who represented a broad coalition of disability advocates. In a statement, the four noted, "The meeting was educational, positive and productive. The outcomes from the meeting were significant. Mr. Owen made positive commitments regarding use of the 'r-word' in his comedy routine."

Owen and Showtime pulled the offensive segment from the comedy special. A representative for Owen indicated to Disability Scoop that he will no longer be using the "r-word" in the future.

A couple weeks later, Special Ed's Brewery cropped up in social media. One Ed Mason in Galt, California, branded a brewery with a play on his name and special education. The tagline on the beer label: "'Tard Tested, 'Tard Approved." The t-shirt slogan: "Ride the short bus to special beer." Complete with an illustration of a mini yellow bus, and a child licking a window, no less.

After facing a social media uproar, on June 14 the owner apologized and a few hours later took down his Facebook page. It left a lot of us still wondering what the heck he had been thinking.

On the upside, advocacy had an impact—people demeaning those with disability backed down, offensive material was removed. Voices raised in union can make a difference. Also, both of these stories got attention, furthering the message that it's despicable to make people with disability the butt of a joke.

But then there's this: Both of these guys have done lasting damage. Viewers who saw Owen perform his awful skit live (I can't forget their laughing faces) or watched it on Showtime's On Demand got this message: People with disability are lesser human beings.

People with intellectual disability will surely not forget this. As Frank Stephens, who has Down syndrome, once said in an editorial, "Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary."

It's not known what exactly went on in the room between Owen and the self-advocates he met with. Ultimately and ideally, people with ID get to stand up for themselves. But as the mom of a child who isn't yet aware of this issue, I am here to defend his respect—and demand it. And to me, the retractions aren't enough.

I won't say much about the motives of Owen, who rather quickly went from stating that if people protested his skit he'd use them as material in his shows to backing down. He has a BET reality show in the works, one he seemingly wouldn't want to endanger.

Without some more meaningful action, especially in light of the public attention the above incidents received, retractions seem like lip service. Yes, these men could donate money to relevant causes or organizations such as the Special Olympics. Rapper 50 Cents wrote a $100,000 check to Autism Speaks in restitution for posting a video in which he mocked a 19-year-old with autism working at an airport he passed through. When blogger Kari Wagner-Peck called journalist Chuck Kloserman on his use of the word "retard," he apologized and donated $25,000 to a charity of her choice for people with intellectual disability.

But what if these men took it to the next level, embraced the very people they insulted and helped spread the word about what they learned? Ed Mason could hire people with intellectual disability in his (hopefully renamed) brewery. Gary Owen could invite a person with intellectual disability—perhaps one of the self advocates he met or, hey, what about his cousin Tina?!—to appear with him in a show and help people better see that people with ID have their own unique, winning personalities. Owen writes his material. Surely he could come up with a skit that involves people with intellectual disability instead of deriding them.

At the very least, Owen could have mentioned that he met with the self advocates on his frequently-updated Facebook page, or issued an apology there. He's no stranger to giving himself credit for being a good guy:

Of course I am grateful that the hateful segment was removed from Owen's Showtime special, and that he met with the self-advocates. It's good that Special Ed's Brewery quickly responded to the rightful outrage about his brewery.  But, really, after you have put something so cruel out there, there's no taking it back. To quote author Steven Camden from his book It's About Love, "Apologies are for when you forget something. Or bump into somebody. Apologies are for accidents. You can't apologise for something you chose to do. That's like apologising for being you."

It comes down to understanding that people with disability have feelings just like any of us do. They deserve to be treated with consideration, acceptance and respect. If that were the case, no apologies would be necessary.

Wednesday, June 22, 2016

This is what it means to be open-minded about disability

Max has been asking about tap dance lessons ever since he went to the showcase for Sabrina's dance school. He loves to dance and likes to rhythmically stomp his legs as he watches TV, so I thought this could be great for him. He wanted to take the lessons at Sabrina's school, because he'd like to star in the show next year.

Of course I was going to ask. I thought starting off with a private lesson would be best—just Max and a teacher one on one, and me willing to pay for that attention. Still, I was apprehensive about the response I'd receive. Openness to accommodating Max in programs for typically-developing children has not been my experience.

I am not one to be easily beaten down; I'm of the Mack Truck Mom variety. But my heart hurts for Max when places aren't open to including him, like that kid program at a hotel a couple of years ago and various camps and programs I've approached over the years. I have heard and read many similar stories from other parents facing the same. My friend Hallie has a sweet daughter with Down syndrome who couldn't return to a camp she'd attended last summer because staffers felt it was too much work to assist her int the bathroom or deal with the fact that sometimes she had issues walking around in the heat.

Besides being heartbreaking, it's downright infuriating when programs don't welcome our children. Why do people who regularly work with children and youth think it's OK to slam the door closed on those with special needs?  Including kids in events and programs isn't as costly or hard as people might think (here's a helpful post about that from the CEO of the nonprofitKids Included Together).

To be sure, the Americans with Disabilities Act demands "reasonable accommodations" for people with physical and cognitive disabilities. Problem is, "reasonable" is a gray term and the law also lets people off the hook if the accommodation poses an "undue hardship," such as a financial one.

Mostly, it takes an open mind. As the parent of a child with special needs, you are always hoping for those open minds.

So I emailed the owner of the dance school. I told her how much Max had enjoyed the performance, that he had cerebral palsy and that he was gung-ho to tap dance. I asked if there would be someone on her team who would be willing to try a tap and/or dance lesson. I said I would do anything to enable Max, and would be happy to discuss possibilities.

The owner responded yes, seemingly without hesitation. "Generally, our privates are an hour—but we can tailor to make it to whatever works," she noted. "He may want to come in to try tap shoes on at some point.... Honestly, I think this is a wonderful idea and I am happy and open to help in any way possible."

And it was that simple. She didn't ask a single question about his CP or his abilities. Her approach: We'll figure it out. How much richer our children's lives would be if only more people had that attitude.

We'll be trying a lesson after our vacation next week. Who knows where this will go. No matter what, I am excited and elated that a door was held open for Max...even as a part of me wishes this weren't so rare.

Tuesday, June 21, 2016

Mothers against the month of June

Like childbirth, I forget how bad it is as time goes by. Unlike childbirth, it happens every year. June, to be specific—as in, the month.

I. Hate. June.

As every parent knows, EVERYTHING IN THE WHOLE WIDE WORLD happens this month. There's some big-deal school project to finish up (typically entailing a frantic dash to Staples right before the store closes), end-of-year exams, a school festival or performance, a dance recital (and rehearsal!), a music recital and/or chorus performance (and rehearsal!), sports playoffs, end-of-year sports sports team parties, final sessions for swim club or any club you made the kids join that they never attended only now it is June and you want to get your money's worth before the club ends, the end-of-year Girl Scout party, teacher gifts, your neighborhood's annual block party and at least several other random parties, possibly a graduation to attend and possible graduation parties to attend, spontaneous swims and pool parties, spontaneous BBQs plus shopping and packing for camp if your kids are doing sleepaway camp (typically entailing a frantic dash to Target right before the store closes).

Meanwhile, camp forms are overdue and, whazzat email, the school is already alerting you to forms due for the next school year?!

And WHAT exactly were you thinking when you scheduled the kids' dentist and eye doctor appointments for June?

And SURPRISE! One of your kids' schools ends three days early because of unused snow days and it's your bad because you neglected to spot that update on the school calendar!

Amidst all this, you have to get a gift for Father's Day and a gift from the kids. So you settle for breakfast in bed, homemade cards plus an IOU for whatever he wants. It's the thought that counts! And it's amazing you even had time to think! Why? J-u-n-e.

My sympathies to mothers of kids whose birthdays fall in June. Hot tip for parents considering another child: Plan to have the baby not in June.

September may have a rep for being back-to-school hectic, but June is like twenty Septembers combined. And at least your kids have motivation in September, even if it's just for new school supplies. By June your usually do-good child has decided that it's summer and homework is optional. Who learns anything in June, anyway? And how many parents still even care?! And so why get to school on time? Your 11-year-old will likely still be brushing her hair in the bathroom at 8:45 a.m. at which point school has already started. Why? J-u-n-e.

Schedules are a moving target. At least one important event happening outdoors will inevitably get rained out and it will be rescheduled at the exact same time another important event is happening. If your child's sports team makes the playoffs you will be forced to rapidly rearrange your schedule, even if it involves something you have been looking forward to all year long. One of my friends nearly had to give up tickets to Hamilton when her daughter's team got to the softball playoffs, but mercifully the game got moved. She thinks she would have opted for the playoff. As she says, "At least I could've held it over her head for the rest of her life!"

On the one Sunday when you would like to have a relaxing family barbecue, too bad, there are 11 pre-scheduled activities, none of which involves burgers or corn. Not to mention the fact that barbecues always sound so much more relaxing than they are when you have kids.

Meanwhile, all you want is twenty minutes—JUST TWENTY MINUTES—to trim the stupid dead twigs off the hydrangea bushes, but THERE ARE NO SPARE TWENTY MINUTES IN THE MONTH OF JUNE.

Reading your book club book? Yeah, right. 

And wouldn't it be nice to get one of those summery pedicures? Or, at the very least, polish your own toes? Bwaaaaaaaaaaaa-ha-ha. The best you can hope for is to find a couple of minutes to hastily trim your toenails so you don't look like a hermit when you drop your kid off late at school.

Why? J-u-n-e.

We could all use recovery time once we have made it through June. Too bad we have kids. Who are out of school.

Let's just dump June! Let's start a petition! Who said we needed 12 months in a year?

Monday, June 20, 2016

Daddy's boy

Ben has been saying "Da! Da! Da!" a lot lately. I'm enchanted by his language development, especially because I still remember how much I ached for Max to babble when he was a baby. I'm wondering if Ben is going to say "Daddy" before "Mommy"—Dave and I have a friendly competition going on. Then I discovered that Max is aiding and abetting Dave.

I am not surprised that Max wants Ben to say Dave's name first; Max is a Daddy's boy. He and Dave regularly go out on weekends to eat or for adventures (involving eating). And so, Max had big plans for Father's Day—he wanted to take Dave to see Finding Dory at a nearby theater where they serve food as you watch the movie.

Max decided to wear an Oxford shirt, just like Daddy usually has on. Then he asked me to dab on some of Dave's cologne and use some of his hair gel. Dude!

I loved the word cloud that Max made at school for Dave (and that the word "eat" is right on top)
When Max was little, I don't know that I ever thought the day would come when he and Dave would be out and about like any father and son. For starters, Max was fearful of going to new places. He didn't see a movie in a theater until he was 10 (Monsters University, a day I'll never forget).

I also couldn't imagine that he and Dave would have conversations—real conversations—and that they would spend so much time together. Not because Dave has to look after him, but because he truly enjoys his company. And trying new restaurants together, of course. Bonus points if they have a fire truck theme.

It wasn't that I didn't think Max had the potential. But when I was in the thick of Max's developmental delays, I was looking for the next immediate physical or cognitive advance—speaking a consonant, walking up a step, reading a word. Dreaming that he would someday grow up and hang out with Dave, just two guys out to have fun, wasn't even on my radar.

So when I watch them head out and Max says "See you later, Mommy!" I feel a burst of happiness every single time. 

Friday, June 17, 2016

The Special Needs Blogger Weekend Link-up: In memory of the Pulse 49

What to do if you're new here

If you wrote a post related to the massacre at the Pulse nightclub in Orlando, share it here. Or, as usual, share any 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: Feeling hopeless about the Orlando massacre? One thing we can do

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, June 16, 2016

Feeling helpless about the Orlando massacre? One thing we can do

In my twenties, I used to go dancing with friends at a gay bar in New York City on Saturday nights. We found it both fun and freeing. We could dance our hearts out without getting hit on. We felt unscrutinized. We felt welcome.

I thought of those days as I read social media messages sent from Orlando's Focus club on the night of the massacre. They've been one of the most haunting things about the tragedy. Unlike 9/11, when Facebook and Snapchat weren't around, this time we could read plaintive texts from a young man who saw what was coming. We could watch a video taken by a 25-year-old woman minutes before she was murdered. They died in their safe space.

Like many, I've felt helpless these last few days, and angry. Helpless because there is nothing to do for the victims, other than donating money to their families. Angry because I feel powerless to do anything to prevent this from happening again. Like many, I've found myself ranting on Facebook about the need for gun reform and by that I mean an all-out war on weapons, as the problem is hardly just about making guns less easy to get; stolen ones are widely available on the black market.

But as I read and re-read the stories and stared at the victims' photos, I thought about one thing that we, as parents, can do: teach our children tolerance.

I didn't grow up with an abundance of it. My father had certain antiquated p.o.v's, and that's as much as I'll say because he was a wonderful father. Becoming a parent made me extra-conscientious about prejudice, especially as Max's mom. I quickly realized the discrimination and intolerance children with special needs face, sometimes through painful experiences.

I'm relatively liberal-minded, and assumed my kids would turn out that way. But as I've sat and pondered what I can do in the face of the Pulse killings, it's occurred to me that my children won't simply pick up tolerance and acceptance through osmosis. I need to make more of an effort.

I know that, as with most things, children watch and imitate our own behavior. This means being aware of how we talk about people who are seemingly different than us. Sabrina and I have had conversations about what's more alike than different about people with disability, and that everyone has their own unique abilities, but I have not done enough to address that about people of other races and ethnicities.

Raising tolerant children also means discussing differences that exist in our own families, and how we value them. Again, we've talked about this with Sabrina here and there, but come to think of it, never with Max. Who needs acceptance as much as any of us do.

Raising tolerant children means that when we talk about hate crimes, like this one, we address the why. Max still isn't aware of such events. Sabrina and her friends tend to text about them. I've talked with her about people hating others merely because of their skin color, religion, ethnicity, size and their choice of loving women or men. I've explained that people who hate are often very unhappy themselves. We had a good talk about this on Holocaust Remembrance Day in May.

Raising tolerant children means breeding confidence, as kids with low-esteem are the ones most likely to treat other people badly. This, I regularly try to do, ditto for the schools my children attend.

I recently read a great exercise for teaching kids about diversity, suggested by the Anti-Defamation League. Gather lemons in a basket and hand one out to each child. Ask them to examine their lemon and note how it's shaped, its size, its markings. Have everyone puts their lemons back in the basket, then ask them to find theirs. Usually, the kids are able to do so. Exploring how they recognized their lemons (whether because one was big, say, or had discoloration) can lead to a discussion about the variety that is humanity. And then, you peel the lemons, put them back in the basket and ask kids to find them which point they will discover that all the fruits look alike. Which can trigger a discussion about how people are similar on the inside.

I am not standing here on a soapbox. I am looking up to the heavens, aching for something concrete to do in the face of a mind-boggling tragedy. Instilling tolerance in our children is one key way we can better their future and this country's—and pay tribute to the Pulse 49.

Image source: Flickr/Joe Piette

Wednesday, June 15, 2016

A dad helps create a food company for his tube-fed son

This guest post is from Tony Bombacino, who with his wife, Julie, cofounded Real Food Blends. They make 100-percent real food meals for kids and adults with feeding tubes. When he isn't working or chasing the kids around the house, Tony enjoys cooking, fishing, traveling, golfing and cheering for the Bears, Cubs and Bulls. 

George Bernard Shaw once said, “There is no love sincerer than the love of food.” I grew up in a big Italian family that definitely subscribed to this belief and lived it to the fullest. My childhood and the years after are full of memories of my grandparents, Dad, aunts, uncles and cousins cooking, sharing recipes, celebrating great food—and of people telling me, “Anthony, you gotta eat something!” (I wonder why nobody tells me that anymore?!) It’s no wonder, then, that when I became a father I was beyond excited to pass on the love of cooking, share recipes and family traditions in the kitchen and make more memories with my own kids.

I never imagined my only son would never taste my cooking or be able to eat by mouth.

Anthony John Bombacino III (“AJ”) was born on March 20th in 2011. By this time I was blessed to be the dad of a healthy, beautiful, caring daughter (Luca Jane) who loved to spend time in the kitchen with Daddy as I made her lasagna, meatballs, Sunday “gravy” (aka red sauce), chicken noodle soup and more. This was my first and only son, my boy who would carry on the family name, and of course, help his sister carry on our family traditions.

AJ was a little small when he was born, but we were home from the hospital in a couple of days and he was thought to be 100 percent healthy. For the first six months of his life he was breast fed, growing and seemingly “normal.” But then, AJ had a 45-minute seizure while visiting family in Ohio, seemingly out of the clear blue. He was rushed to the hospital to be stabilized and analyzed. Fast-forward through brain MRIs, sleepless nights in the ICU, an ambulance ride back to Chicago (closer to home) and many confusing conversations with doctors. We were told AJ had been born with serious brain malformations and that he may never walk or talk. My wife, Julie, and I were in shock.

After a few days we returned home, still in shock and very uncertain about AJ’s future. We had no idea what was coming next. AJ would go on to have more seizures over the next few months, and started having other issues, one of which we thought was bad acid reflux. No biggie, right? Wrong. One specialist suggested a swallow study to see if AJ was aspirating food into his lungs. My wife and I were sure he would pass and it would be fine.

This test was on a Friday. We would not leave the hospital until the following Monday, 72 hours later, when AJ had surgery to get a feeding tube (G-tube). We had no idea what it was, what it meant for AJ’s life or our own, if it would be permanent or temporary, what or how he would “eat” or anything. We didn’t know what we didn’t know. Fear and sadness set in.

Imagine this guy who grew up living for food, loving to cook and wanting nothing more to share the kitchen with his own son someday being told that his son now had to be 100 percent fed through a feeding tube. I was still trying to process all the other stuff about my son’s brain injuries and what his future may or may not be, and my love for food turned to anger over my son not being able to enjoy the great meals and memories I had as a kid.

Like we all have to, my wife and I quickly pushed fear and sadness to the side and focused on learning and action. AJ didn’t do so well on the steady diet of formula (which is often heavy on corn syrup and synthetic ingredients and light on real food) that is typically prescribed to tube-fed kids and adults. He vomited many times per day, not sleeping, not growing and not happy.

Julie lead the charge to learn about other options for feeding my son. We thought and hoped there had to be a better way. After reaching the point of desperation, we finally went against the suggestions of our doctors and dietitians, bought an expensive Vitamix blender and began blending real, nutritious food for AJ at home.

We started with the basics, stuff we thought everybody eats or could eat—chicken, ground beef, kale, carrots, spinach, quinoa and the like. As we learned more about what did and didn't blend well, we realized that AJ could have almost anything we were eating as he doesn't have food allergies and seemed to enjoy most things, like his mom and dad. This meant he could enjoy leftover Mexican food (think carnitas) and Italian food (pasta and meatballs), and be involved in our family food traditions. Yeah, real food! Julie also got AJ involved in our meal times, either seating him on the kitchen floor or in one of his special high chairs so he could be around us as we were cooking and blending.

AJ's vomiting and irritability improved almost immediately. He began to gain weight, his skin color improved and I started to feel like we regained some stability and control. I began to love food again.

Blending AJ’s food was a different, but rewarding experience, than cooking. Different in that I was usually the head chef for most of our family meals and my wife the world’s best sous chef. With AJ’s blended diet and blending, Julie became the head chef, leading the charge to come up with new and nutritious blends, an interesting and often hilarious journey (ceiling and walls can quickly look like a crime scene if you don’t hold the cover on the blender tight enough)! I learned to become her sous chef, cooking ingredients, chopping, getting things set in the blender and sometimes blending and putting into freezer bags. It was a learning and growth opportunity for all of us, including Luca who eventually helped, too.

After blending meals for AJ for months with great success, we were preparing to take a trip to Disney with the kids. This would be the “aha moment” for what would become Real Food Blends. Before we left, Julie and I were stressing about having to pack the blender, grocery shop for ingredients for the blends, find time to blend and on and on. It seemed more like work and less like vacation. We wondered if there was a pre-packaged, shelf stable, blended real food meal option that we could buy and bring with us. There wasn’t, and in the middle of our desperation to give our son better nutrition and to improve the realities of our new life, we were crazy enough to go for it.

Driven by our Chief Inspiration Officer (AJ), we raised money from friends, family and angel investors, and assembled a rock star team of consultants to help us come up recipes, source ingredients, produce meals and distribute them around the country. We currently offer three different meals (soon to be four): Salmon, Oats and Squash; Orange Chicken, Carrots and Brown Rice and Quinoa, Kale and Hemp. They’re sold through our website, a nationwide network of home healthcare companies and DMEs (durable medical equipment companies). Our meals are covered by insurance in many cases, and are now on the formularies of leading hospitals like The Cleveland Clinic and Mayo Clinic. It’s still a bit surreal and hard to believe how far we have come over the past five years.

Our adult customers and pals tell us they feel more satisfied with our blends, and experience less stomach pain and less reflux as our meals sit like...meals! Formula is almost the consistency of water, whereas our meals are a thicker puree—so they are still thin enough to fit through the tube, but sit in the stomach like a meal. Caregivers say they feel much better knowing they are giving their loved ones real food instead of giving them the same thing over and over again, with no real connection to "food" or what the rest of the family is eating.

This past weekend I made a ton of meatballs, Italian sausage, pork ribs, rigatoni and a huge pot of my homemade "gravy." AJ is getting that in some of his blends this week, along with Real Food Blends. Best of both worlds for this little guy! Although my food experiences with AJ are much different than I would have ever expected, I've ended up being exactly where I’m supposed to be—with more blessings and joy than a dad could ever hope for.

I’d love to hear your thoughts on this topic and continue the conversation with you. Email me at

Tuesday, June 14, 2016

Put a little love and understanding in your heart

Sometimes, I wish that it hadn't taken having a child with disabilities for me to understand that you can be disabled and live a good, full, happy life.

Sometimes, I wish I'd understood before I had Max that children and adults with disability do not deserve pity; what they need is parity.

Sometimes, I wish I had been able to see the abilities.

For too many years, I didn't get it. That, I regret. And I likely never would have, if it weren't for Max. For that, I'm grateful.

I was pondering this as Dave and I sat in the audience of a coffee house for people of all abilities, with students from three different schools performing. Max had been enthusiastically practicing for weeks.

One boy did stand-up comedy and brought the house down. A guy sang "Hotel California" and "My Sweet Lord," accompanied on guitar by his music therapist. Another guy sang Fight Song as he played guitar. A girl did a beautiful "Ave Maria" on the violin. A girl and a boy from Max's class sang "What a Wonderful World."

It was a really entertaining evening. Everyone did a great job, period—not a great job "despite" their disability. Over the years, I have heard that word "despite" far too often. It's derogatory. Yet another thing Max has taught me is to see and appreciate the can-dos, not the can'ts.

Max sang "Put a Little Love in Your Heart," complete with hand motions. I don't think he could have looked any more joyful doing it. I don't think I could have smiled any bigger as I watched him, or been any more proud.

Monday, June 13, 2016

Baby therapy

It was quiet in the house yesterday, on a day when I didn't really want to be alone with my thoughts. Dave had taken Max and Sabrina to the town pool, Ben was napping and I was scrolling through news reports about the mass shooting at the Orlando club. I felt sad and disturbed. I worried about the growing threat of terrorism, and the lack of gun control in this country. 

I stared at the message on the Pulse Orlando Facebook page for I don't know how long: "Everyone get out of pulse and keep running." 

Then a good thing happened, which is Ben woke up early from his nap. Ordinarily, this isn't something I welcome except it forced me to tear myself away from my computer. 

After I changed him, I put him on the floor of his room. Ben's just beginning to wiggle-move around and is steady enough to not roll over and bump his head on the wood floor. I placed Sophie the Giraffe a bit out of reach to see if he could get to her. She is his BFF; he literally yelps in excitement whenever I hand him to her. 

I decided to lie down on the floor, too.

Babies have the most intense focus, the kind a lot of us often don't. In adults, it's called "flow"—when you're so immersed in an activity that you don't notice the passage of time.

 Ben batted Sophie around. He nibbled on a leg. He bopped her head on the floor. I squeezed her so she squeaked, and he flashed me his two-toothed grin.

As I lay there, my anxiety started to slip away. It was the zen of Ben. And for a little while, the world was a less sad, scary place. 

Friday, June 10, 2016

The Special Needs Blogger Weekend Link-up: Whatcha got?

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: That viral video about a doll: What I wish people learned 

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, June 9, 2016

The perks of getting to know your fire department

I got a voicemail the other day from our local fire chief. After an incident in town involving a delayed ambulance, I had emailed our mayor about our own experience with our city's Emergency Medical Services years ago, and the chief wanted to discuss it with me. "If this is Fireman Max's mom, please tell him I say hello!" he said.

As if I needed any more proof that our firefighters are The Best.

Ever since Max decided that he would like to be a firefighter, exciting things have happened. Both of us became ambassadors for Kidde Fire Safety. We have also spent a lot of time at the fire station near our home, getting to know both the trucks and the firefighters. Max refers to one of the guys as his best friend. All of them have welcomed him and made him feel like one of their own. On his twelfth birthday, a few firefighters showed up at our house in his favorite truck and escorted him to his party.
Even if your child does not aspire to be a firefighter, there's good reason to get to know your local fire department. Because....

A fire station visit gets kids thinking about fire safety

Aside from taking in the razzle-dazzle of the fire trucks, when kids visit a fire station they can ask questions about safety and the work firefighters do (and likely pick up a coloring book and hat, too).

Kids can get comfortable with firefighter gear

Seeing a firefighter all decked out can be intimidating for young children, along with those of any age who have special needs; some have been known to run away from firefighters in emergency situations, out of fear. But when kids can see their tools and outfits, including their helmets and respirators, at the station or on firefighters, it can help make them less scared of encountering a firefighter in an emergency.

Firefighters are amazing confidence boosters

I don't usually like to generalize, but all of the firefighters I have met in recent years—both at our local station and in ones we have visited in our travels—have been incredibly welcoming and encouraging to Max. The ones at our local department have made Max feel like he is capable of doing anything, exactly the message we have always sent to him. In their eyes, he is a hero.

It's good for firefighters to know your situation

If you have any concerns about fire safety—whether an exit plan or a hazard—you can get insight and advice from your local fire station, and even schedule a free home fire safety inspection. If you have a child or other family member with special needs or who's elderly, you can ask that he or she be placed on a  special list so the fire department knows where their bedrooms are located in the house.
(For more fire safety tips, check out these from Kidde and these from SafeKids).

We owe our firefighters appreciation

While our local firefighters are paid municipal workers, there's not enough money in the world to compensate them for the work they do. Meanwhile, volunteer firefighters protect more than 50 percent of Americans, particularly in rural areas. They all deserve props for keeping us safe, and stopping by to say hi or bring some home-baked treats is one easy way of showing the love.

This video pretty much sums up Max's relationship with firefighters.


For more on fire safety from me and Fireman Max:

9 summer fire safety tips for outdoor fun

Making a family fire escape plan for kids with special needs

What we learned from our home fire safety inspection

Protecting your family from a home fire

For additional info, check out: 

Kidde on Facebook
@KiddeSafety on Twitter
@kiddefiresafety on Instagram

This post is one in a series sponsored by Kidde, for whom I am a compensated ambassador. 

Wednesday, June 8, 2016

Talking family, disability and Hillary with Chelsea Clinton on a historic day

Yesterday, I had the good fortune of going to a roundtable discussion with Chelsea Clinton about family issues —a particularly great day to be at Hillary for American headquarters in Brooklyn, NY. I didn't go with any particular intention, but as it turned out, I had the chance to bring up an important point about children with disability.

Business as usual: Not this election!
Major update, coming soon
Chelsea is charming, down to earth and super-sharp, as you'd expect. She acknowledged what's been happening out there ("I never thought I'd see in my lifetime the normalization of hate speech") and spoke about growing up as the daughter of Hillary and Bill and her first exposure to dirty politics, when her father ran for governor of Arkansas and the incumbent attacked her mother.

Chelsea noted that paid leave is a personal thing for her. When Hillary was pregnant with her, she worked at a very traditional law firm in which women who had children never returned. Hillary broke ground in creating a paid leave policy. "I couldn't imagine a better role model of a working mom than my mom," Chelsea said. She acknowledged that parenthood changes your perspective: "I didn't know I could care any more intensely about politics until I became a parent."

Soon, she opened up the discussion to questions about Hillary's plans. We talked education, healthier lunches for kids and more about paid family leave—which she referred to as "unfinished business" her mother is working toward. Disability came up several times. ""Every child deserves an education regardless of disability, and we've never fully funded that," Chelsea noted. "We need more federal support for structural changes that need to happen in schools." She also pointed out that it is legal to pay people with disability a third less than their peers make (workers with disabilities earn 37 percent less, or 63 cents to every dollar). "They're paid substantially less for equal work," said Chelsea. "That's outrageous."

Hillary's autism initiative also came up, an ambitious plan that includes screening, diagnosis, treatment, services and legal protection. My mind wandered. What about people with cerebral palsy and Down syndrome? I thought.

Chelsea had mentioned, at the start of our discussion, that she welcomed advice. I raised my hand and said I had a suggestion for making a message more universal. And I told her that I had a child with a disability that wasn't autism, and that while the autism initiative is amazing it excludes people like my son. I noted that one in six children ages 3 to 17 in this country has a developmental disability, and that if Hillary could address disability more broadly it would be a good thing. "I'll tell her," Chelsea promised. I truly hope she does.

On the way out, we passed by The Big H Wall, where staffers and visitors post sticky notes about what Hillary is fighting for.

I added my hopeful note to the hundreds there.

Back in January The RespectAbility Report, a nonpartisan political commentary on the 2016 election, asked the presidential candidates to answer questions about disability issues. Five of the eleven, including Donald Trump, did not respond. Hillary did; these are her responses.  

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