Book review of A Snicker in Magic

Here’s another book review by our public relations and social media intern Allison Mulder with her look at how authors approach disability in their stories.

by Allison Mulder

Snicker-book-coverUntil I started reading A Snicker of Magic, I had no idea it featured a character with a disability.

Possibly because author Natalie Lloyd doesn’t depict the disability as a huge, interruptive, “inspiring” moral lesson for the main character. Instead, she presents the disability as totally normal.

In A Snicker of Magic, Felicity Juniper Pickle’s mother moves their family back to her old hometown, Midnight Gulch, TN, a town with only faint traces left of the wonders that used to thrive there — “snickers” of leftover magic. One of these traces is Felicity’s ability to see words hovering around her, given off by people and places — “words people are thinking about, or words they want. Some words glow, and some dance. Some have wings, and some have zebra stripes.”

In another case, Felicity’s friend Jonah Pickett hints at having a certain “know-how” for what people will need — though it’s not clear whether this is true magic or just his innate thoughtfulness. Jonah also uses a wheelchair. Why? We’re never told.

Jonah’s disability is depicted with a light touch — sometimes so light that it almost risks the reader forgetting about it. But subtle lines bring us back — a line about getting on and off the bus, for instance — just long enough to remind us before moving on with the story.

I like the way A Snicker of Magic aspires to help normalize his disability. Felicity is never terribly taken aback by the wheelchair. It never turns into some heavy-handed after-school special. There’s even a line where she asks Jonah, “How do you play hockey?”

Jonah starts to answer, “I play my own way…I can’t stand up to hit the puck, obviously, but I can—”

“I didn’t mean that,” she says. “I mean that it’s too hot here. There’s no lake frozen enough to skate on.”

I feel like this tiny exchange says a lot about what Jonah is used to people asking. It hints that his disability is something that affects him every day, to the point that he expects questions to center on his disability, not his feelings. Through Natalie Lloyd’s adept writing, readers learn that Jonah’s disability is not the only thing about his character that’s important. Jonah has a wheelchair. But he also has a father away in the military. He has secret responsibilities helping people in town as an anonymous do-gooder, the Beedle. He has a know-how. He’s a fully fleshed-out character, and I think this would be a great read for someone who wants to see disabilities portrayed without that being the sole focus. Present, though perhaps not explored in great detail.

It’s also a ridiculously cute book, which I enjoyed a lot.
For a taste — or maybe a “snicker” — of the novel, Natalie Lloyd recently wrote a Thanksgiving short story about Jonah that you can read for free. Enjoy!

And if you have any thoughts about how to strike the balance between normalized portrayals of disability or more detailed descriptions of the experience, please share in the comments!

 

Just say hi

felicity-JSH-PageI always end the presentations I give to civic groups and college kids with a Q&A session. “Here’s your chance,” I tell them. “Ask me anything about what it’s like being blind.” In addition to the questions I get about whether my other senses improved after I lost my sight, how I know what colors I’m wearing, stuff like that, I’m always asked what to say to a blind person waiting to cross the street. “Should I say anything?” they’ll ask. “Is it rude to see if they need help?”

My answer? I like it if you say hello. “If we’re out there getting around on our own with a white cane or a guide dog, you know we’ve got chutzpa; we’re not shy.” I tell them that if they say hello, I know there’s someone there to ask for help if I need it. “Otherwise I can just say hello right back and carry on.”

People with disabilities are in the minority. It’s understandable that you might be unsure how to start a conversation with one of us, so I was pleased to hear recently that a new campaign to help people lose their fear of interacting with people who have disabilities has released a series of short videos encouraging people to “Just Say Hi.” Spots feature television hosts Gayle King and John Oliver and actors William H. Macy and Michael J. Fox. The videos are appearing on CBS stations nationwide and in some New York City taxis and train stations. You can look and listen to the videos online, too. And if you ever want to start a conversation, these videos make it simple: just say hi.

 

How our child with disabilities takes us where we never dreamed

My wife Rosa and I have worked in education ever since we graduated from college, which gave us summers free to travel extensively — as single people, and then together as a married couple. Rosa and I both subscribe to the philosophy that “you never take a trip, the trip takes you.” This approach led us to fresh anchovies and wine straight out of the bottle in the Cinque Terre, fresh carnitas and tortillas in the markets of Mexico City, and an after hours private tour of the Sistine Chapel in Rome. We’ve been very fortunate.

Now we try to use this same approach with parenting. We don’t take Elena places, but rather she takes us. Maybe this is the case with parents of children who don’t have disabilities as well? We simply just don’t know.

Elena and Rosa

Elena and Rosa at the Art Institute of Chicago

When Elena is home during breaks from school, it is not possible to tell her to go off and play by her self. She simply can’t. And truth is, we’re not as entertaining as her school friends are. If Elena is left in her chair, stander, or walker without someone to play with, she gets bored. And frustrated.

So Rosa and I are charged with providing productive and stimulating activities in which our daughter can fully participate. During winter, spring, and summer breaks from school, Elena takes us to — and sometimes restricts us from — places we never expected.

Some of the greatest gifts we’ve received for Elena have been memberships to the Brookfield Zoo, the Field Museum, the Morton Arboretum, and the Art Institute of Chicago. These memberships provide Elena with close encounters with majestic giraffes, journeys through Pre-Columbian South America, dog-sled demonstrations, and some of the best visual art in the world. Again, we are very fortunate.

Rosa and I agree that we visit and discover more things than we thought we would because of the things Elena “can’t” do. Without Elena, I am quite sure we would never have spent so much time watching a peaceful lion slumber in the middle of the winter at the zoo, nor would we have rediscovered our love for early 20th century Expressionist art. I know that. Nonetheless, I was overcome with a sense of melancholy over Thanksgiving break when we were rushing to the Art Institute on a dreary and rainy Saturday morning.

On trips like these we have to worry about how Elena will eat in her wheelchair. Will they have food that she can eat? Will there be enough room in a downtown restaurant to accommodate her chair? Will they mind us sitting for 90 minutes because often that’s how long it takes her to eat? I am aware that taking any 5-year-old out to lunch can be a difficult task, but outings like that are hardly ever, ever in the cards for us. Wouldn’t it be so much easier if we could just go out to lunch with our 5-year-old rather than rush home to feed her?

My melancholy was broken by my wife’s guffawing over a particularly funny remark on NPR’s Wait, Wait, Don’t Tell Me on the car radio. I shifted into first gear. We continued on our journey to the Art Institute.

It wasn’t until we parked that we realized we’d arrived at the museum just as it was opening. Hardly anyone was there. Most were still shopping in the post black Friday chaos.

We rolled through some of our familiar exhibits: early colonial Latin American Art, Contemporary American, and then found ourselves once again in French Impressionism. Sure, we’d seen Monet’s “Haystacks” a hundred times, but when I looked over at Rosa she beamed and whispered, “Look, we’re alone in a room of Monet’s! How cool is this?” I almost burst into tears.

My melancholy had left me thinking I existed in a binary world of cans and can’ts, yeses and nos. As I looked around me at six of the 25 “Haystacks” that exist in the world, I didn’t see that binary world anymore. I saw magenta, violet, lilac, grey, orange, emerald and all shades of these colors of life that I’d never experienced before.

I was all alone in a room with my daughter, wife, and Monet. Elena brought us there because of all the things she struggles with. Inasmuch as I often think about what we have lost, Elena has taken us to places we would never have been and introduced us to the most compassionate and loving people. Thanks to Elena, we’ve experienced events beyond our imagination. So yes, breaks from school can be exhausting, but I’m thankful for the time. We are indeed very fortunate.

Read Bernhard’s previous blog post about a device that helps Elena speak with her eyes.

 

12 holiday travel tips for families with special needs

airplane-file0001305960191End-of-year holidays often require traveling to visit friends and family who live far away. Spending many hours in the car or getting on an airplane can be challenging for families with special needs. Easter Seals Crossroads in Indianapolis has compiled tips from their behavior analysts, therapists and respite providers that can help make holiday traveling a more enjoyable experience for everyone involved.

Before the airport:

1. Make sure you pack everything your child might want/need in a carry-on bag, including a change of clothes. Create a sensory pack with their favorite calming toy, stuffed animal, object or blanket. Sensory items are a great relief for kids who may become anxious due to first time traveling and fear of the unknown.
2. Discuss what the experience of the ticket counter and the security check might be like to the child before you arrive at the airport. You could simply talk to the child about it, discuss it with them, or use social stories to aid in the explanation.
3. Make sure you call TSA Cares at 1-855-787-2227 at least 72 hours before boarding the plane to ask any questions you may have. A TSA Passenger Support Specialist can be requested to provide on-the-spot assistance. The TSA has a helpline for individuals with special needs. (https://www.tsa.gov/travel/passenger-support)
4. Try to book flights when your child is generally the most able to handle a change in routine. For many children this may be in the morning when they are not tired and overwhelmed from a long day.
5. Ask your doctor for a letter describing your child’s condition especially if your child has an “invisible condition” such as autism. It might be helpful to show documentation of the disability to airport security or flight attendants. Visit the TSA’s website and print the disability notification card that you can present at the TSA screening. (https://www.tsa.gov/travel/special-procedures)

At the airport and on the plane:

6. To make your walk to the gate easier, approach the check-in or information desk to ask for a ride or shuttle to your terminal.
7. Inform TSA of your child’s disability and how they might react to security screening or waiting in long lines. Most airports have a family line or will allow the parent and child to be screened together.
8. It might be a good idea to bring noise cancelling headphones for the airport and the plane to help drown out some of the loud noise in the airport and the airplane. Sunglasses can block out the harsh bright light in airports and create a calmer environment.
9. Bring your child’s favorite music or no mess activity to keep them entertained on the plane. Colorful string beads, bags of beads, and items that light up are great additions for the traveling sensory pack.

On the road trip:

10. If your child escapes from their seat easily consider getting covers for the seat belt buckles and remember to check the child locks on the door.
11. Make sure your child is prepared for the road trip by creating a social story about the trip to read for them. This story may need to be read several times prior to the actual trip.
12. Have a visual aid to represent how many hours you have traveled and how many are left. A timer can help your child countdown the hours or minutes until the next stop or activity.

These tips can make holiday traveling easier for children, their parents, and other passengers. It is never too early to plan ahead, no matter how far your trip will take you.

For more information, visit the transportation section of Disability.gov to start planning your trip today.

This post originally appeared on Disability.Blog, the official blog of Disability.gov. Disability.blog features weekly posts from experts like our Easter Seals blogger Sara Croft, who address important topics for people with disabilities, their families and others.

 

Review of A&E’s “Born This Way” about teens with disabilities

Born This Way reality TV stars with intellectual disabilitiesLast week the cable channel A&E launched a reality series called Born This Way. All six episodes of this show follow the lives of young adults who have intellectual disabilities who live in the greater Los Angeles area. I was able to get a sneak preview of this show and was absolutely thrilled to watch it.

Our daughter is a big reality TV show fan, with The Kardashians at the top of her list. Me, I’m more the Love It or List It type — I want to see creative people make old houses into new, updated spaces.

I think Born This Way will appeal to us both.

The first scene set the tone for the whole series. Two handsome young men sitting at a bar drinking beers, talking about girls. These two young men were doing what young men across the country are doing every day. It’s expected, typical. The fact that the young men have Down syndrome does not overpower their basic man-ness.

The show also captures the real push-pull between these young adults and their parents. Their parents love, support, encourage and promote their children’s abilities. They also fear for what the future holds. One of the most poignant scenes is when a daughter tells her mother that she needs to get a life of her own. It was powerful, profound and incredibly honest.

I love this show for many reasons, most importantly because it provides a venue for adults with disabilities to speak for themselves about their lives and their dreams.

Tune in tonight at 10 pm Eastern. I will be setting my DVR, and I hope you will, too. With all of us watching the current six-episode series, we can influence A&E to make an additional 6 episodes.

Push Girls poster of cast

 

Check out Easter Seals Thrive’s media hub for more media reviews and recommendations as well as a look at disbaility in media.

 

These D.C. internships for students with disabilities even pay for housing

U.S. Capitol buildingIf I were in college right now, or had just finished college, or was attending law school or grad school, I’d stop everything I was doing and immediately apply for a spot in the 2016 AAPD Washington DC Summer Internship Program for Students with Disabilities. AAPD stands for the American Association of People with Disabilities, and their summer internship program provides college students, law students, new graduates and other graduate and professional students with all sorts of disabilities the opportunity to work in public service for 10 weeks on Capitol Hill and at federal agencies. Each intern is matched with a mentor who will assist them in their career goals, and as if that isn’t enough, the internship also provides the interns with a stipend, transportation to and from Washington, DC, and fully-accessible housing. From the AAPD web site:

At the beginning of the summer, interns participate in a 1-week orientation session to learn about AAPD as well as the disability rights movement, meet the other interns, and participate in a variety of engaging workshops and events. As part of the AAPD network, interns also receive opportunities to attend events on Capitol Hill, conferences, community events, happy hours, and more.

Ah, to be young again. Sigh. So while I may not be able to apply, if you qualify, I sure hope you take advantage of this. The application is available online and is due on January 15, 2016 at 5:00pm Eastern Standard Time.
AAPD asks you to submit all documents to internship@aapd.com.

 

9 great apps as gifts for kids with special needs

About-The-GuideAbout this time last year, I wrote a post about a Toys “R” Us Toy Guide for Differently Abled Kids — a free toy-selection guide they put out every year during the winter holiday season for parents and friends of children with disabilities. Items featured in the guide promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills.

Well, I just got news that they’ve added another guide to help with gift-buying. The Toys “R” Us App Guide for Differently Abled Kids is available this year to help identify apps that are appropriate for children who have special needs. Toys “R” Us selected the following nine apps, sorting them all by specific skill-building needs:

  • LumiKids Park by Lumos Labs, Inc. This interactive learning experience engages players cognitively, socially and emotionally! The park is filled with fun, skill-building challenges. Plus, physical activities are hidden within for gross motor practice.
  • Wheels on the Bus by Duck Duck Moose, Inc. A musical adventure complete with swishing wipers and spinning wheels! Kids practice vocalizations and verbalizations by singing along, while being introduced to instrument sounds. Hand-eye coordination and isolated finger movements come on board as players spin the bus’s wheels, pop the bubbles and open/close the doors.
  • Dr. Panda’s Restaurant by Dr. Panda Ltd Combine mealtime with fun time! Ten delicious, international dishes and 8 animal guests to serve provide the perfect recipe for fun and learning. Kids chop, blend and fry their way to food recognition and ingredient identification as they create the perfect meal for their guests, while feeding their social and emotional skills.
  • Doodle Buddy by Pinger, Inc. Fun you can have with your fingers! Aspiring artists can paint, draw, scribble and sketch, add decorative stamps and share their original masterpieces with family and friends via email. This app helps promote isolated finger movements as kids finger paint and place the embellishments. Kids also can practice shape, letter and color recognition and identification.
  • Monki Birthday Party – Language Learning for Kids and Toddlers by Monkimum SL. It’s Cowy’s birthday! Help her celebrate by decorating, making the birthday cake, breaking open the piñata and more. Children focus on a variety of language skills as they follow instructions, practice shape and color identification and recognition, and practice beginning math skills such as counting and size comparisons.
  • Reader Bee and the Story Tree by Learning Circle Kids LLC. Based on brain research, this app is buzzing with ways to motivate little learners! Children start by identifying and recognizing individual letters and progress to understanding how a combination of letters form words. Best of all, the learning happens at the child’s pace, allowing each player to learn in his or her own style.
  • Curious George Goes Camping by Tribal Nova. Thoroughly entertaining, this app helps young children develop receptive and expressive language and reading-readiness skills through animation, personalization and story-telling activities. Kids are encouraged to listen to stories regaling George’s curious capers, ask questions, predict what will happen next and create their own animated stories.
  • Super WHY! by PBS Kids. Alphabet Power. Spectacular Spelling. Wonder Words. Story Saver. Kids play with the 4 familiar main characters from the hit PBS TV series with 4 interactive games that help teach essential literacy skills! Vivid colors provide visual stimulation, while the Learning Rewards, music and sounds offer pleasant auditory input. A fun way to keep the principles of the Super WHY! Power to Read available anytime your child wants a reading adventure.
  • Sago Mini Friends by Sago. Fix a birdhouse. Play dress-up. Enjoy a snack. Players spend time with their favorite Mini friends! Each friend’s house introduces a different interactive experience that helps children prepare for future play dates as they share, take turns, learn to be patient and develop empathy. This virtual play date features 5 friends and 10 activities for plenty of pretend-play opportunities.
  • Tiggly Shapes by Kidtellect Inc Just tap and the screen reacts! The 4 interactive toys (circle, square, triangle and star) have silicone touch points that allow your tablet to react to the shapes as if kids are using their fingers. Three award-winning apps help blend the virtual world with reality as kids incorporate the tactile shapes into play and practice shape recognition, story telling, creative expression and more. Best of all, no Wi-Fi, Bluetooth or batteries required.

holiday gifts wrappedWith all the apps available to children with special needs, I don’t know how Kids “R” Us managed to limit their list to just nine.You can also check out our list of fun storytelling apps for both nonverbal and verbal kids and other apps for families with disabilities.

If any of your favorite apps for kids with special needs were left off of the Toys “R” Us list and you’d like to recommend them to fellow Easter Seals blog readers looking for gifts for kids with special needs this year, by all means leave your recommendation in the comments section here – thanks.

 

Did polio have anything to do with Itzhak Perlman’s musical talent?

Itsaac-Perlman-hqdefaultMaybe it’s because I’m blind. I’ve heard Itzhak Perlman perform on the radio and on television, but without being able to see the renowned violinist on stage, I had no idea he has a disability.

Until, that is, I heard Steve Inskeep interview Itzhak Perlman on NPR’s Morning Edition a couple weeks ago.

Itzhak Perlman contracted polio when he was 4 years old, and he’s used crutches ever since. When asked about his disability during the NPR interview, he said it has nothing to do with his performance. “I can’t walk very well, but I’m not onstage to do walking,” he told NPR’s Steve Inskeep. “I’m on the stage to play.”

I thought it was a great answer. Steve Inskeep, however, kept pushing with follow-up questions: Does it make any difference to you that you sit rather than stand during solos? Did polio limit your options, and that’s why you gravitated to playing the violin? So you’re telling me that people expected no less of you because you couldn’t walk?

I know that those of us who have disabilities are in the minority, and it’s human nature to be curious about how and why we do the things we do. But isn’t one or two questions enough? Before asking one of his many, many disability-related questions during the interview, Inskeep acknowledged that the particular one he was about to ask would be “surely an unanswerable question” and then went on to ask it anyway. “Would you have been the same musician that you are had you not been stricken with polio at a very young age?” Perlman’s answer to the surely unanswerable question was just another example of what a gracious and self-aware man he is:

“I think yes. You know, a lot of people like to think that polio was an inspiration in what I do. I think that music has to do with what kind of passion do you have. If I was destined to be a musician, it would have happened.”

So hmm. Maybe the reason I didn’t know that Itzhak Perlman had a disability has nothing to do with the fact that I can’t see him. It’s just that his disability is not the most important — or the most interesting — thing about him.

 

Social Emotional Wellness for Youth with Autism

Logo for RethinkRethink is offering a webinar at 4 p.m. EST (3 p.m. CST) this Wednesday, December 9, 2015, called Social Emotional Wellness for Transition Age Youth with Autism Spectrum Disorders (ASD), and one of the experts online is none other than our own Maurice Snell.

Maurice was nonverbal as a child, and it wasn’t until he was diagnosed with autism at age 6 and attended Easter Seals Therapeutic Day School that he learned to communicate with others. From there he went to the high school where his mother taught, and he graduated 13th in his class with a 3.5 grade point average. In May 2006 Maurice received his bachelor’s degree from Saint Xavier University in Chicago.

Rethink is an online platform that places evidence-based treatment solutions in the hands of educators, clinicians, and parents working with individuals with developmental disabilities like Maurice. Their webinar will explore the challenges transition-age youth face when they leave the education system and identify ways we can do better to support these young adults.

Maurice Snell and Beth Finke

Me (Beth Finke) and Maurice Snell

Maurice Snell is 32 years old now and employed as the Development Coordinator at Easter Seals Metropolitan Chicago’s Central Office. For many with autism, achievements like those are beyond reach. “Maurice…exhibits milder effects of the complex neurological disorder,” Rethink’s press release for the webinar says. “Despite that advantage, Maurice’s future was uncertain for most of his childhood.” More from Rethink’s press release:

Anne Roux, Drexel Institute researcher and author of numerous leading studies exploring the challenges and needs of young adults with autism, will discuss current research on mental health in young adults with ASD and the significance of social and emotional development. She will be joined by Dr. Kimberly Smalley, the autism clinical specialist/behavior analyst for the Redwood Coast Regional Center in California who will discuss best-practices in promoting social emotional wellness for this population and Maurice Snell, the development coordinator at Easter Seals, who will share his first-hand experience of transitioning into adulthood as a young man with ASD.

Registration for Social Emotional Wellness for Transition Age Youth with Autism Spectrum Disorders (ASD) is free and open to all. Register now — not only will you have the privilege of hearing Maurice Snell tell his story in his own words, but you’ll also learn about the impact of social emotional learning and ways to help more students make an effective transition after leaving school.

 

Comcast makes The Wiz Live accessible to all

The Wiz live TV event poster with charactersTonight, December 3, 2015, at 8 p.m. EST (7 p.m. CST), NBC is airing a live production of the musical The Wiz. Without being able to see the actors dancing around stage, musicals aren’t something I typically get very excited about.

But tonight’s presentation is hardly typical.

Easter Seals corporate sponsor Comcast has teamed up with NBC to make The Wiz Live! a special event we can all enjoy – even those of us who are blind or deaf, or have visual impairments or are hard of hearing.

Comcast and NBC are providing closed captions as well as a pilot of live video description (a narrative audio track that describes the show’s key visual elements) to bring Queen Latifah, Mary J Blige, Ne-yo, Common, David Alan Grier and the rest of the cast to life for everyone.

Promotional material says customers who are deaf or hard of hearing can find help and support videos on closed captioning settings with American Sign Language at xfinity.com, and video description will be available in every local NBC market where SAP (Second Audio Program) audio feeds are available – I cannot wait to hear how they put Ne-Yo’s step-touch and smooth glides into words!

Learn more about video description and closed captions on XFINITY at xfinity.com/accessibility.