Friday, August 31, 2018

The Disability Blogger Link-up: long weekend edition

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 you won't imagine about your child

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

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

Thursday, August 30, 2018

He shoots, he scores: the video

Max is a master of air hockey, a skill he picked up in camp a few years ago. He surprised us with it—we dropped him off, and while we were in the rec room he headed over to the air hockey table and slammed some pucks in. Camp is also where he learned to be a pool shark

You pick up some pretty amazing skills at camp.


Wednesday, August 29, 2018

Dance classes where children of all abilities can be themselves

This guest post is by Sarah, mom to Ruby, age 11; they live in Brooklyn, NY. Ruby was born with a rare brain malformation on the right side of her brain, polymicrogyria, that has caused left-side hemiplegia, learning disabilities and sleep and seizure disorders. “While on paper the diagnosis sounds terrible, her loving and sweet spirit pushes her through so many challenges,” says Sarah. “Her love for animals, drawing Anime cartoons, fashion and her sense of humor make her shine.” 

Ruby loves dancing, too. This is her second year at Dancing Dreams, a nonprofit that offers dance classes and performances for children and young adults ages 3 to 21 with medical or physical challenges in New York City, Queens and Long Island. Here, Sarah shares the impact that the program has had on her daughter’s life. 

When Ruby was small, she loved music and dance, as many little girls do. We searched and searched for a program that could accommodate her needs and couldn't find anything. We finally signed her up for a class when she was 8—we thought it could work for her because the class size was small.

Even though I’d explained to the teacher that Ruby's body was different, during the first class she was adamant about teaching Ruby as if she didn't have challenges. Because Ruby’s left hand barely functions, and her left side is weak, she was unable to accurately hold her arms over her head, or follow the basic ballet stages. Her mind and body could not coordinate with the routines that all the other girls were doing.

I watched through a viewing window as Ruby kept doing things wrong but kept trying to keep up. A few times, she couldn’t keep her balance and fell over. I never once saw the teacher try to help. It wasn't an environment of compassion and acceptance. In short, it was a total disaster. Ruby left the class crying and I was heartbroken.

We found Dancing Dreams after her rehabilitation doctor and OT mentioned it to me. From the start, it was a completely different experience. Everyone was kind, supportive and encouraging, and Ruby had so much fun. She danced alongside girls in wheelchairs and walkers. All students had a mainstream teenager by their side to help.

Joann Ferrara, the founder of Dancing Dreams, also ran the class and she was so encouraging and positive. The general vibe of the room was happy and upbeat. Everyone was engaged. From the back of the room where I waited with the other parents, I could tell that it was pure pleasure for all the girls to have this space. It wasn't about specific abilities or technique, but about giving your all for the love of dancing.

When I asked Ruby afterward what she thought, she said, "Dancing Dreams made me feel comfortable with my body."

As a parent of a child with a disability, that is the greatest gift. It is a confidence that Ruby takes with her every day in her life. She had a moment around age 10 when she realized she has a disability, and being part of Dancing Dreams has helped her embrace it and understand that different people have different abilities.

Last spring, Ruby spoke to her entire school when a visiting author, Sharon Robinson (Jackie Robinson’s mother), was there to talk about overcoming racism. She gave a short speech that she'd written about how she overcame having a disability to dance. To hear her speak about this without any prompting from us or her teachers showed to me what a deep impact Dancing Dreams has had on her. It is being surrounded by other children that may have different disabilities, but who share a world where things don’t come easy.

Ruby has been in two performances since she joined Dancing Dreams. Both experiences have been exhilarating for her, especially since there are makeup artists and costume changes! They offer students the opportunity that they otherwise would not have: to perform on stage in front of family and friends. They get to feel the nerves, pride, joy and exhilaration that comes with that. They are surrounded by encouragement without judgement.

At the dress rehearsal for the Dancing Dreams 2018 Spring Peformance

Besides Ruby enjoying her dancing, what also makes me feel so fortunate is the teens who help. They better understand our children's lives, and become messengers on their behalf to spread kindness, empathy and knowledge about disabilities. They break stigma among their peers and family members, who may have never interacted with a disabled person. Each helper has changed the life of the child they help; they create a bond and support that is special. That’s what I call a win-win. 

We're so grateful for being part of this community. Joann is a visionary who is helping the disabled community in multiple ways. The good that comes out of Dancing Dreams is not only for the children, but for us parents and knowing we have found a fit. I hope the program expands so that more children can experience how special Dancing Dreams is.

Ruby's helper graduated this past year. While she was sad to see her leave, she looks forward to meeting her new one this fall. She also has requested to help with the younger class! Ruby is drawn to being a helper, and models herself after the teenagers. She feels at home in class—and free to express her truest self.

Find out more about Dancing Dreams here.

Tuesday, August 28, 2018

9 things that make back to school easier for everyone

I have two feelings about back-to-school season:

YAY! The kids are back in school! See ya!

EEP! I am so not ready for that stress.

No matter how I feel, my darlings are definitely headed back next week, so there's that. These are a few things I've learned over the years that make this time of year easier.

Do a drive by.
Some parents schedule visits so their kids can check out school before it opens. When Max was a little nervous about starting high school last year, we drove to the school the week before it started, sat in the parking lot and talked about how his first week at school would go and stuff he was excited about (lunch topped his list). It calmed him down and got him excited, too.

Get the schedule ahead of time.
Email the school for your child's schedule so you can go over it with him. If your child takes a phone to school, snap a photo of the schedule for easy access.

Read books about school
Good ones: This School Year Will Be The Best by Kay Winters; Teachers Rock by Todd Parr; I Am Too Absolutely Small for School by Lauren Child (a Charlie and Lola book, one of my favorite children's series); First Day Jitters by Julie Danneberg; My Best Friend is as Sharp as a Pencil by Hanoch Piven (extra fun because it involves drawing); The Night before PreschoolThe Night before Kindergarten and The Night Before First Grade by Natasha Wing; If You Take a Mouse to School by Laura Numeroff; School Bus by Donald Crews; The Art Lesson by Tomie de Paola; Lunch Money and Other Poems About School by Carol Diggory Shields; Pete the Cat: Rocking in my School Shoes by James Dean; and the classic Curious George's First Day of School.

Count down together.
Print out a calendar page and mark off the days to school, or use stickers, to prepare your child.

Get kids newly excited about old school supplies.
I get it—kids want fresh pencils and new backpacks for the start of the school year. Of course (and I am so going to sound like a mom here), there's nothing wrong with last year's stuff. I like to do a little repackaging: I'll get some new clip-ons, key chains and patches for backpacks, and a new pencil case for old-school pens and pencils. You can also ask friends if they'd be up for a backpack swap.

Hit school supply stores at off hours.
I do Staples runs as soon as the store opens; it's usually quiet-ish for the first couple of hours afterward, especially key for children with sensory issues. You can also find me sitting on the couch ordering stuff from Amazon's Back to School section at 12:35 a.m.

Pick up a personalized notebook.
The custom notebooks I've given the kids over the years—with their names, with fire trucks, with emoticons—have been favorite BTS treats. You can find ones on VistaPrint, Shutterfly and of course, Etsy.

Create a little BTS ritual
Ever since Sabrina was a kid, I've left a silver friendship ball (similar to this one) hanging on her doorknob on the morning she returns to school. Inside, I put a little treat: a string bracelet, stickers or magnets for for her locker. She always beams when she opens it (before proceeding to freak out about making the bus on time). Hooking a shopping bag over the door works just fine, too.

Get kids to sleep earlier the days before school starts. 
Everyone always tells you this, but it really is key. It will be a harsh awakening for everyone on the first day of school if your kids are still on their summer sleep deprivation schedule.

I can't wait to see all the kids' back-to-school pics!

Monday, August 27, 2018

What you won't imagine about your child

When Max was a kid, our dining options were limited to a greasy spoon near our house. It was the only place where Max felt comfortable, likely because there was no din there and the servers knew him. He liked to sit in the same spot every time: the booth closest to the bathroom. The waitress would just take us directly there when we showed up.

It's impossible, when you are immersed in the realities of your child's challenges, to imagine that they could significantly improve or that life won't always be the same.

Maybe the doctors at the hospital or some specialist you met deflated your expectations; Dave and I encountered our fair share of grim doctors speaking their gloomanddoomspeak. Maybe you have learned to take baby steps of hope—if only he'd grasp an object, take a bite, sit up for a bit, move his legs a little, speak a syllable, poke his head into the event or activity before leaving—because you've accepted that development happens in inchstones, not milestones. Perhaps you dare not wish for any more or you risk despair should your child not achieve.

It's not that I couldn't imagine Max's successes; it's that I wouldn't let my heart and head go there. 

I hoped that he'd walk someday, but wouldn't have imagined he'd not only walk but speed walk, too. I hoped that he'd talk someday, but wouldn't have imagined I'd have full-on conversations with him. I hoped that he'd read someday, but wouldn't have imagined he'd read both books and signs to the point where he helps navigate car rides. I hoped that Max would be able to feed himself someday, but wouldn't have imagined he and Dave would become buddies in food adventures.

These days, Max not only wants to visit new restaurants, he wants to go all the time. His preferences: steak and sushi, making him the most high-maintenance food person in our family. For his birthday in December he is already planning a trip to a fancy steakhouse to celebrate. For now, the occasional chain steakhouse will do.

Meanwhile, Max has also gotten into the habit of having two dinners, because #teen. Around 7:00 p.m. or so a few nights a week, Dave and Max will head out to Home Depot, aka Max's home away from home, where he checks out appliances for his dream home in Orlando. Lately, I've gotten calls from Dave around 8:30 to say that they are at a diner. "He's eating my food, too," Dave will text.

I. Would. Never. Have. Imagined.

In June, when I dropped Max off for his first prom, I left him seated at his class's table. There was a salad in front of him. Max doesn't eat lettuce—it's really hard for him to chew. There was a big slice of cucumber and tomato, too, choking hazards. I could have cut them up for him but figured that he didn't want me to do that in front of his friends. So I decided I'd hail a server and see if they would serve him chopped up cukes instead.

I leaned over, kissed him goodbye said, "Max, don't eat that salad, OK? See you later."

"I KNOW!" he said. "BYE."

I. Would. Never. Have. Imagined.

Friday, August 24, 2018

Head on over to The Disability Blogger Weekend Link-up

What to do if you're new here

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

Like this: Three boys walked by, and I didn't cry

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, August 23, 2018

Every child needs a person like this in their life

Max came home from day camp this week wearing a name tag for the red group. "Fireman Max" had been handwritten onto it. Max was actually in the blue group, but he didn't think that made sense given that red is his favorite color. He'd started harumping about it when I dropped him off on the first morning. June, his group leader, didn't blink an eye. She's fully aware that Max is all about red and aspires to be a firefighter, and created the name tag for him.

June gets Max. She's known him since he was about seven years old; we met through the Friendship Circle, where she's a longtime volunteer. She has adored him from day one.

"Thinking of my friend in DC!" she'll text me, with a picture of a fire truck. One year, when she was on winter vacation in Florida, we got a pic of Santa on a fire truck. She's always looking out for his well-being. Max wears bandana bibs and a few months ago, she let me know about a bib company she'd found on Etsy.

Max adores June right back. A while ago, she had him over to her house for a mac 'n cheese lunch, and he still talks about it. She may be a few decades older, but friendship has no age limits.

It for sure takes a village to raise a child with disabilities, yet sometimes just one person can make all the difference. When Max is around June, I know he feels the warmth of her love (and she is a particularly warm and cheerful person). I have the peace of knowing that he's with someone who adores and respects him, who strives to make him happy and who doesn't think twice about his physical needs. "Max will need help with eating his sandwich" I'll text her, and then not give it a second thought. I often do worry about Max choking on a food when I'm not there for mealtime, because chewing is a challenge for him, but I know he's safe with June. I feel the same way when Max is with my Mom, but it's a special gift to have a person like this in your child's life outside of your family.

June drove Max and Sabrina home from camp the other day (Sabrina is volunteering), and when it was getting late I called. They were at a fire station in her town—June had surprised him. She knows just how to make Max gleeful. And that makes me really, really happy.

Here's hoping you have a June in your life.

Wednesday, August 22, 2018

Three boys walked by, and I didn't cry

I was driving in the car alone the other day, always a treat, when I passed by three boys around Max's age. They were cracking up. I looked at them and thought, "Wonder what they're laughing about?"

It was a moment remarkable only for what I didn't think: Max is never going to be one of those boys walking down the street with friends.

Over the years, I've had my fair share of those sad flashes, especially when driving around town. At first, the feelings stemmed from my struggle to embrace Max's disabilities. It had nothing to do with my beautiful, sunny, determined child, but with the fact that when I was growing up, our culture did not promote disability positively. I'd had no experience with anyone with disabilities. I just didn't know.

As time passed, my feelings morphed into despair that Max would never have the kind of childhood that involved walking around with friends, without supervision from me. It seemed so unfair. Once, I burst out in tears at a stop sign as two boys coming home from school passed in front of my car. 

Things have changed. For one, on several occasions Max has ambled around town and downed pizza with a boy who's part of a visiting friends program run by the Friendship Circle. He's also hung out with teens he's met through evening programs at his school. And he's had the time of his life with fellow campers at sleepaway camp. These meetups may be part of organized efforts, but that makes them no less meaningful to Max.   

I've changed, too. I've grown to understand and accept that Max may not lead the existence of many teens in our neighborhood, but he is content. We do the best we can to enrich it and enable his hopes and dreams. He doesn't think anything is lacking in his life (well, other than a trip to Disney World and a house in Orlando), and why should I?

When Max was a little guy, I figured that the passage of time would assuage the sadness in my heart. That's gone, but the biggest change of all has been in my mindset. Max has helped me see the power of diversity: development comes in all forms, speech and communication come in all forms, movement comes in all forms, playing comes in all forms, learning comes in all forms, friendship comes in all forms, happiness comes in all forms. One kind is not better than the other, just different. 

And so, I drove on, putting distance between me and those boys on the street. I left behind no trail of wistfulness whatsoever.

Image: Flickr/Yumen

Tuesday, August 21, 2018

The Sesame Place developmental milestone

We took Ben to Sesame Place this weekend. I mean, Max and Sabrina were there to enjoy themselves, too, but we were all so excited to introduce Ben to its wonders. I think it's been a good eight or nine years since we were there with our olders. It turned out to be especially magical for all of us.

As soon as we walked into the park, Max and Sabrina spotted the Vapor Trail junior roller coaster and decided to go on ti. This was groundbreaking—Max has a history of being terrified of roller coasters. When he was Ben's age, we couldn't even coax him onto the rides. He came off, grinning, not a hair out of place since his counselor at camp had put it up into a bunch of ponytails, at his request.

Ben was awestruck, so much so that at first he barely cracked a smile. It was like he was in disbelief: I GET TO MEET ELMO?! AND BIG BIRD? AND GROVER? AND GO ON RIDES? AND RUN AROUND IN AMAZING SPRINKLERS? My friend Carrie knew the phenomenon well—she and her husband called it "Sesame Place Face."

Wha? Elmo? For real?

"Elmo tree!" said he.

For our two days there, Dave and I operated in Divide and Conquer mode—typical for our family on trips. He went off galavanting (as he likes to say) with Max, and Sabrina and I hung out with Ben. We met up for meals, shows and to go on some rides. Max couldn't get enough of Elmo the Musical Live!—he and Dave returned to see it once again.

Cookie Monster gave Max a high-five

Cookie and Elmo have got moves! The chickens, too.

 Good times on the carousel

This big kid liked Oscar's Rotten Rusty Rockets

Flying Cookie Jars!

Ernie's Waterworks!

Sesame Island!

 Big Bird's Rambling River!

Slimey's Chutes!

The house from Sesame Street!

The parade was thrill after thrill—OMG, Big Bird! Abby Cadabby! Oscar! A friend noted that Ben was the perfect age for Sesame Place, but evidently I am the perfect age, too, because I was seriously excited to see Ernie and Bert.

When Ben met Rosita

Happily, there was good ice-cream to fuel us as we dashed around or, rather, as Ben dashed and Sabrina and I trotted after him. I checked out the park's new quiet rooms, located by the Rambling River. They are small, air-conditioned rooms, with adjustable lighting, an armchair and a maze puzzle to help over-stimulated kids chill out. 

As we bounced around, Dave texted that Max had decided to try out the giant roller coaster, Vapor Trail. And he loved it. He went on it another five times, and when he saw me, he was gleeful. He did a wave hand motion, his word for roller coaster. When he was little and we went to theme parks, he used to do that with a look of terror on his face—as in, keep me away from that thing. But now, he was so proud of himself. There is no "Child will ride on roller coaster" developmental milestone. And it's not as if I was eagerly awaiting him to do it, after all these years. But it was pretty awesome. 

We left the park pooped, but exhilarated. When we got home that night, I showed Max the photo of him with Cookie Monster. He was about 18 months old, and I was pregnant with Sabrina. I remember telling Cookie Monster to hold Max carefully, because he wasn't yet supporting himself so well. Max smiled at himself in the photo. 

"Roller coaster: no," he said, gesturing at the picture, and made the up and down motion with his hand. "Now, yes!" 

Monday, August 20, 2018

Why shouldn't every beach have chairs like this?

This is a WaterWheels—a floating three-wheeled beach buggy. Six of them landed on the Asbury Park, New Jersey beach this season thanks to the Christopher and Dana Reeve Foundation. They also installed AccessDeck, extended mats that won't sink into the sand, at several beach entrances. The initiative was modeled after one in Miami Beach, reports

Awesome, I thought. Also: What's taken so long? Also: How many beaches will get these in the near future? Not just the rolling beach chairs, but the kind that enable people with disabilities to get in the water. 

I started noticing beach wheelchairs after I had Max, and I got a very small sense of how hard it can be to navigate the world when you have mobility challenges. You can roll those big-wheeled beach chairs into the water. But you're out of luck if you'd like to take a dip, as people at the beach (and the pool) like to do. WaterWheels have been on the market for nearly four years. As is often the case with mobility equipment, they aren't cheap; they run a couple of thousand dollars. Still: It seems like they should be a rightful part of public accessibility to beaches.

There's an awesome foundation in Miami, The Sabrina Cohen Foundation, that holds Adaptive Beach Days on the first and third Sundays of the month. I love that. But again: Shouldn't every day be a beach day for people with disabilities? Of course. Imagine if you lived by the ocean but were only able to enjoy the water a couple of days a month, because it might not be possible for your partner or a friend to carry you in. Imagine.

Clubs like The Elks and The Rotary Club and the Lions Club often fundraise to provide beach wheelchairs to city Parks and Recreation Departments, so you could call your local one. But it seems like municipalities should be building the costs of chairs like these into their budgets.

Cities often look to improve quality of life for residents. It seems like they should be just as concerned about equality of life.

Image: video

Friday, August 17, 2018

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

What to do if you're new here

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

Like this: The amazing thing the mom at the other table did

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, August 16, 2018

What I Did This Summer. By: A special needs mom

What I did this summer:

• Went to work
• Went to the town pool
• Washed all the pool towels and bathing suits, including the towel that was abandoned under the third row of the minivan and whose moldy odor was a total mystery ("WHAT'S THAT SMELL?!!!") until we finally discovered it three weeks later
• Called the insurance company to find out about the status of reimbursement for various therapies for my child
• Told child "No, you can't move to Disney World" approximately eleventy billion times
• Drank iced tea and even had time to add a slice of lemon!
• Got the school forms in early July and tried to ignore them
• Grumbled about having to fill out school forms
• Filled out the school forms
• Went to the beach
• Called the insurance company to ask why they had reimbursed my child's therapists instead of us, even though I had noted on the forms that the bills were paid
• Cleaned the house/shopped for groceries/did more laundry/picked up after everyone/continued to ensure our family could exist
• Went on a couple of weekend getaways
• Observed that all the other families on Facebook were going on way more exotic vacations than we were and came down with a bad case of summer vacation envy
• Called the pharmacy to ask why child's automatic renewal prescription didn't automatically renew
• Saw Incredibles 2 three times because child wanted to
• Preemptively called our district's transportation coordinator to ensure that this year's bus ride to school would not again be one hour and twenty minutes for a ride that should take maybe twenty minutes
• Ate ice-cream
• Booked various specialist appointments for the coming year
• Called the insurance company to find out why a bill sent in three months ago was never reimbursed
• Ate corn and barbecued burgers
• Enjoyed the fireflies at dusk
• Preemptively called child's bus transportation company yet again and what?! How could you not remember me? We spoke for twenty minutes a couple of weeks ago about my son's transportation needs and the fact that he had an hour and twenty minute bus ride this year and...yadayadayada
• Stress-ate ice-cream at 11:30 p.m. while trying to figure out schedule for fall therapies
• Continued to tell child that he could not move to Orlando
• Stared longingly at the lounge chair in the backyard

Wednesday, August 15, 2018

Thank you and you and you and you

Some of Facebook's flaws may have been revealed in recent months, but I'm a diehard fan girl. The community I've found there, especially on my blog page, is a regular source of guidance, inspiration, comfort and laughs, too. Same goes for this blog. So, greetings! I'm so glad you're here.

I've got community on the brain because of a podcast I recently did with Elizabeth Aquino and Jason Lehmbeck, two smart, voicey parents of children with special needs. They recently launched Who Lives Like This, which is all about caregivers of children with disabilities. Elizabeth and I know each other through the blogosphere; a gifted writer, she blogs at a moon, worn as if it had been a shell. I connected with Jason, a tech entrepreneur, through a mutual friend last year.

I swiped this photo from their podcast page to show you how cool they are. Hopefully they won't sue me.

The focus of I the episode I was on was community, but we chatted about lots of things—sibling relationships, iPad innovation and that scandal from years ago, ridiculously priced adaptive equipment, ableism and the Starbucks straw controversy. I'd be remiss if I didn't get Elizabeth a shout out for singing what could be the new anthem of parents like us everywhere.

In the course of our conversation, I mentioned the amazing feedback I got when I went on Facebook last spring and ranted about Max's hour and twenty minute bus ride to school. A bunch of other parents had experienced the same. That's where I learned that I could have a shorter bus ride written into his IEP—and that's exactly what happened. Thanks to this community, Max's mornings will be significantly improved this school year.

This is all to say: at the risk of sounding like a cheesy greeting card, I so appreciate you. Er, except the ones who leave rude comments. I am grateful for your insights, the info you share and your cyber shoulders to cry on. I am heartened that we are spreading the good word about our children in every form of social media, and changing perceptions every day. And I am so, so grateful for the reality checks and support that enable us to be stronger parents and to better enable our children. Rock on, Elizabeth and Jason.

Listen to episodes of Who Lives Like This here.

Tuesday, August 14, 2018

The amazing thing the mom at the other table did

This weekend, we went out for ice-cream to celebrate Max's homecoming from camp. (As if we needed an excuse for ice-cream.) I figured Max would get his usual, chocolate and vanilla swirl, but he wanted cookie dough, too—clear proof that camp had broadened his perspective and letting him miss summer school was worth it. 

There was a family with two little boys seated at the table next to us. Suddenly, I heard the mom say, "Everyone talks in their own unique way." Instantly, I knew what was going on: one of her boys had asked about Max's speech.

I still feel a twinge in my heart when I overhear anyone talking about Max. Part of me wishes that his differences did not make him the subject of conversation. But part of me also understands that when children are around people with disabilities, the encounters can serve as springboards for discussion. This time, Max was the springboard. He is not yet aware of the stares, whispers or remarks about him. That's another double-edged sword: If Max did realize it, then he could be his own advocate...but he'd know. For now, I'm the one who notices.

As the parent of a boy with disabilities, I ache for kids and adults to see what I do: my child, i.e., a person. It's not unexpected that the disabilities are what people tend to notice first. But sometimes, they are all that people can see.

Parents can play a major role in shaping children's views of those with disabilities. Often, I hear ones go "Shhhh!" when their children ask about Max. Not this mom. I tried to hear what else she said but couldn't. A few minutes later, she said hi to Ben and Max. Max said hi back and Ben ducked his head (he's shy). When we left, I flashed her a smile. "Enjoy your beautiful family!" I said. "Same to you!" she answered.

It was the most simple thing in the world. This woman's child asked about Max, and she gave him the very answer I give children when they've asked about Max: Everyone talks in their own way.

Everyone moves in their own way, thinks in their own way, behaves in their own way. Sometimes people need help getting their words out or getting around. We all share basic needs: to be loved, give love and feel respected.

While I'd like to think this mom and son's discussion will continue, it was so heartening to hear just that one sentence.

Monday, August 13, 2018

Is it teen 'tude? Disability? Wha?

"I have a video he made for you but it's mostly him telling his counselor he hates him because he told him he wasn't going to family camp," the camp director wrote me last week. Evidently, Max wasn't happy that following his stint at camp, he wouldn't be attending the five-day family camp that started a few days later. We'd been to it a few times, but couldn't make it this year.

I immediately apologized to her for his obnoxiousness, and explained that when he's said that at home, we tell him that saying that makes people feel bad. Her response: "Don't worry! When he tells us we tell him we love him."

A teen telling his mom "I hate you!" is nothing new. I've got two teens throwing that shade on me. But Max has said it to a couple of his therapists when he wasn't in the mood for therapy. And then he said it to a counselor he actually really likes. And I've had that same conversation with him, but I'm not sure if he's just ignoring me or he doesn't get it.

In general, Max's has a good emotional IQ—he's always readily sensed when Dave or I are upset, and he's eager to make people happy. But his sense of empathy is still coming along, along with his internal filter of what's OK to say and what's not. That has to do with his level of cognition, I think. Yet I'm not sure—maybe he's just being an obnoxious teen.

I hate blaming stuff on his intellectual disability when it could just be a personality thing. Sabrina, who's 13, may not tell people who aren't me that she hates them, but that doesn't mean another teen who's typically developing wouldn't. Either way, we'll keep calling Max on it.

Max came home from camp yesterday and we went out to dinner. He is hell bent on going to Disney World, and he asked Dave to help him look up flights in September. That's not going to happen, but Dave let him scroll through upcoming flights anyway.

"Max, you have school!" Dave reminded him.

"I hate you!" Max said.

"Max, that isn't OK to say, Daddy loves you," I said.

"Guess you'll be going to Disney by yourself!" Dave answered.

"You won't be going anywhere if you keep saying that!" I said.

Max just sort of smirked.

I. Wonder.

Friday, August 10, 2018

The Disability Blogger Weekend Link-up: sharing for the win!

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 it's like to star in a Target ad: scoop from the mom of a kid 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.

Wednesday, August 8, 2018

What it's like to star in a Target ad: scoop from the mom of a child with disabilities

This guest post is from longtime online friend Natalie Hammer Noblitt, a mom of three based in Los Angeles's San Fernando Valley. Her oldest, 10-year-old Nicolas, is "positive, friendly and curious" she says. He's also one of the first children with disabilities—Nic has cerebral palsy—to star in Target back-to-school ads, currently running on major TV networks, cable and at movie theaters, too. Here, Natalie gives the backstory.

Five years ago, we moved from Chicago to L.A. for my husband's job, and I discovered that there are quite a few families here who have kids in the entertainment business. I joked about getting the kids into modeling and acting. Nic has always enjoyed being in front of the camera—he's taken dance, baseball and swim therapy at California State University, where he’d often get chosen or volunteer to speak about his experiences. He became very comfortable using a microphone and speaking to the group.

Nic with siblings Eliza, 5, and Nathaniel, 6

Inclusion has been our family motto for a long time. One of the reasons we were excited about moving to California is the state’s reputation for being very accessible to wheelchair users, something we struggled with as Nicolas neared school age in Illinois. But accessible doesn’t always mean inclusive. We’ve experienced many challenges getting Nic the support he needed at a general education public school. His neighborhood school told us up front they’d never dealt with a child in a wheelchair or walker before. Other families at school sometimes didn’t understand why he was mainstream and wondered if the expense of his supportive services him might take away from their children’s resources. Even in a very open minded and well-funded school, misconceptions persisted.

We wanted this for Nic—and other children like him—because we haven't seen many images in the media that represented them. That has begun to change in the last couple of years, but when Nic was small we would get so excited any time we saw a child with a wheelchair in a commercial or on a TV show. As a family we loved the idea of letting Nic pursue his talents, and also show others that kids with disabilities want to be social and involved. We knew if he could be embraced by the media it might also help other kids feel they are visible, too. Social challenges also exist when your child is the only one at his school with a visible disability.

We started asking around about agencies Although there are agencies in LA that are known for working with kids with disabilities, we ended up approaching DDO Kids because we’d heard great things about their agents from other families. A traditional kids talent agency seemed to make sense so Nic would be considered for roles that both called for children with disabilities and ones who weren't asking for those characteristics. I’m not aware of other children who have a visible disability among the roster of children they represent.

The agency signed Nic in the summer of 2017. Next we got headshots taken, signed up for all the casting sites where actors and models need to be listed (which all require monthly or yearly fees), and got a work permit from the state of California. Grades and attendance are important factors in getting approved for a minor’s work permit. When you are a child with complex medical issues — needing to take time off to see specialists and have procedures done during the school year — your attendance doesn’t always look perfect. We had to work with the permitting agency and show them Nic's IEP before we could get his work permit approved. (We go through that process again every six months to keep it legal for him to work.) These are some of his professional shots, taken by photographer Kendra Kabasele.

Nic started auditioning for commercial and theatrical parts right away. He enrolled in acting classes for children wanting to act in commercials, TV and movies. He had a blast and wanted to keep going, so we felt we were on the right path. The classes led to meeting his manager, April Baker of Stagecoach Entertainment, who joined his agents as part of his representation. She's helped us build relationships in the industry, and also happens to be the manager of one of the other kids in the Target commercial.

The first commercial Nic booked was a Burger King spot that ran in Mexico and Turkey. At the beginning of 2018, he booked a role in a print campaign for a major sports brand (yet we still haven’t seen the results of that work). Later he landed a Nickelodeon summer promotion role, but the final cuts only show him very briefly. DDO Kids submits him for all kinds of roles appropriate for his age. He’s auditioned for TV shows, movies, commercials, print jobs and online content.

You never know how a project is going to turn out, or if you child will be cut altogether, so we all have to be patient and not be disappointed if something doesn’t turn out the way we think. We’ve explained to Nic that while he can have a lot of fun doing these auditions and projects, it is a job and professionalism and hard work are expected if you want to keep getting roles. It’s taught him about saving money, paying taxes and a lot of other really practical skills that will be good for him later in life. (Because we live in California, child actors working in the industry are subject to special laws that protect kids on the amount they can work and where the money goes—money put into a special account can't be accessed by anyone except the child when they turn 18.) Nic also really enjoys seeing all the behind the scenes work that goes into putting together a commercial or film project.

We’re a Target household, and Nic’s entire outfit the days he auditioned for Target came from the store. We were so excited when we got the call from his agent that he got the gig—he popped a wheelie in his wheelchair! He’d been doing this for a year and sometimes auditioned for projects 5-7 times a week. I reminded him how much work he’d put in to get to this point.

The crew and director were all so accommodating and kind when we filmed at the end of June. The director wanted to take Nic’s wheelchair use into consideration: He’d have Nic show how fast he could get from one point to another, and learned some of the nuances of wheelchair use. He realized Nic needed to take time to put on his wheelchair brakes if they wanted him to stay still. Nic was proud to show off his speed and spinning ability. He was supported and cheered on for motivation just like all the other kids were. The two outfits Nic wore in the spot were tailored to fit him just right. I went out and bought them at the store’s as soon as they were in stock because they had become so meaningful to us.

Nic's favorite thing on set was getting to meet the other child actors—and of course the food from craft services. Who doesn’t love a good buffet and plentiful snacks?! I really enjoyed meeting the parents on set or at auditions, sharing tips and just connecting.

Nic and friends on the Target ad set

Being the parent of a child with a disability can be isolating, but I’ve experienced so many warm, open parents of other child actors. We’ve connected on social media and everyone is so supportive. Still, we’ve also gotten some reminders about why it’s important to show that kids with disabilities can do this. Some people have made it clear they think the commercial was a “pity hire,” or questioned Nic’s ability to perform and memorize lines. That’s truly not the case.

Nic works very memorizing lines when needed and has learned to be incredibly professional. He goes in to all the auditions by himself, without my help, answers questions from the casting directors and has a real sense of why he wants to do this. Our family juggles a lot to make the auditions happens, and I help promote him online because many casting directors now want to see kids with a social media following, or use it as a visual resume to see what kid actors do in their free time.

We will only work with projects that we feel have the right message and motivation. And we love to see directors putting disability-specific roles into projects to make the cast better represent all families. Another cool thing is Nic has inspired his younger brother and sister to try acting. We’ll see if his siblings enjoy it as much as he does!

Nic first saw the Target commercial at the end of July, when we were visiting with my sister in Colorado. He was so excited. "It turned out a lot cooler than I imagined," he said.

I've asked Nic what he enjoyed about the experience. "It's very fun and exciting to be on TV and know that people might recognize me," he said. "Even if you look different than everybody else, it's good for all those different types of people to be seen on TV. If people see kids in wheelchairs it might be good for them. Sometimes I know kids make fun of others who are different."

Yesterday we had a meeting with Nic's agents and without my asking him to, he thanked them for helping him get some really fun jobs. They asked how he thought he looked in the Target commercial. He said, "I think I did awesome."

Images of Nicolas alone and with siblings by Kendra Kabasele

Tuesday, August 7, 2018

Flowers that make you really happy

There is a hoya plant on a wooden stand in my room that's pretty ordinary looking for most of the year, with medium-sized green leaves. Then a magenta shoot will suddenly appear at the tip of a leaf, and a week or so later a single flower blooms. It is always glorious, with pink star-shaped flowers that resemble a burst of fireworks.

The bloom only sticks around for a week and a half before it falls apart, but it blisses me out whenever I lay eyes on it. This year, I got to enjoy it for two whole days until I came home from work and pieces were everywhere, likely the handiwork of Ben.

My wedding bouquet had chocolate roses. Other flower faves: ranunculus, Gerbera daisies, blue hydrangea and the $3.99 bunches of alstroemeria from Trader Joe's that come in gorgeous colors and last for two whole weeks. I got into the habit of buying them after Max was born and I needed a pick-me-up.

Thanks, TJ's!

Unlike my no-frills mom, who has always been all "Oh, please don't waste your money on flowers for Mother's Day!" I love me a nice bouquet any time of the year. Given my $3.99 Trader Joe's fixation, I'm not very high maintenance. What are your faves?

Monday, August 6, 2018

How to enjoy life: lessons from a toddler

Ben likes those cornhole toss games—the ones where you throw a beanbag throw a hole in a tilted board. But he's not just interested in getting the bag in; he wants to know where it goes. Whenever we come upon one of these games, he sticks his little face right in the hole to check out what's below.

Toddlers can run you ragged. But they also have a way of making you stop and marvel at rocks. Or wonder at blinking red stop lights. Or find new delight in a boat ride. Or get seriously gleeful about singing the ABC's at the top of your lungs in the car. I'd forgotten this about little kids. Ben's been regularly reminding us.

"LOOKIT! A helicopter!" he'll exclaim, and we all stop, stare and laugh. 

Max didn't go through this phase. I think he was so focused on the big physical movements—crawling, taking steps, using his hands to pick up things—that he didn't much notice the small things. We were similarly focused on him achieving the big things, and we didn't take time to savor, either. Some part of me is probably making up for lost time. 

Ben's not much into being still these days, but he loves having his feet rubbed. If he's upset, all I have to do is take off his shoe and massage a foot. Automatically, his thumb goes into his mouth and he's pacified. There are times when I'm not doing anything except at all sitting on the couch and rubbing his foot, and it's kind of great. I'm not much good at slowing down. 

Now we just need to teach him how to give a good foot rub. 

Friday, August 3, 2018

The Disability Blogger Weekend Link-up awaits you

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

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.

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