Category: Living with Disability

If your child suffers from a sleep disorder, he or she is not alone. According to the American Academy of Pediatrics “sleep problems have a high prevalence throughout childhood and adolescence, with 25% to 50% of preschoolers and up to 40% of adolescents experiencing sleep-related problems.”

Sleep problems including insomnia, sleep apnea, night terrors, bedwetting and sleepwalking are even more prevalent among children and teens with disabilities. One study found that “49 to 89 percent of children on the autism spectrum had trouble sleeping,” says the Therapy & Wellness Connection. “Same goes for 25 to 50 percent of children with attention deficit hyperactivity disorder and 34 to 86 percent of children with intellectual disabilities.”

Sleep deprivation is problematic for all youngsters, but particularly for those with special needs. For instance, “there is mounting evidence that too little sleep can exacerbate autism features, such as poor social skills,” says Spectrum News. “Children who do not get enough sleep often have more severe repetitive behaviors and a tougher time making friends than other people on the spectrum. They also tend to score lower on tests of intelligence.”

Fortunately, there are steps you can take to improve your child’s sleep hygiene. Here are some tips:

1. Determine what’s causing the sleep difficulties
Sleep disorders can be caused by physical or psychological problems. For example, children with Down syndrome are prone to sleep apnea due to anatomical differences. In children with autism, sleep disorders may be caused by anxiety. Consult with your pediatrician or a sleep specialist and talk with your child to learn more about what may be causing the disturbance.

2. Stick to a schedule
It’s not always easy, but experts agree that the more you’re able to maintain a routine — dinner-time, tooth-brushing, bath-time, story-time, massage — the easier it will be to get your child to sleep. Children should also have a regular wake-up time. Try creating a chart with visual cues that concretize the bedtime routine. There are many printable charts available online. Here’s one example.

3. Create a sleep-friendly environment
Keep the room temperature cool and dark, play soothing music or use a rain or ocean-sound app to help children relax. “With calming music and a guiding voice, apps help kids relax, from a ‘body scan,’ during which you relax your body starting with your toes, to breathing and visualization,” says Beth Arky of the Child Mind Institute. Weighted blankets, such as this one sold by Enabling Devices, can also help to decrease sleep anxiety and increase relaxation.

4. Stop food and drinks a few hours before bedtime
“Children with special needs tend to have more sensitive digestive systems,” says Melissa Doman of Melissa Doman Sleep Consulting. “If your stomach is still full when laying horizontal to sleep, acids from the stomach will leak into the esophagus, creating that sensation of reflux.” Additionally, avoid caffeine and sugar which are stimulants and may keep your child from falling and/or staying asleep.

5. Cut off screen-time at least one hour before bedtime.
“The blue light emitted from the TV, computer, tablet and smartphone is detrimental to sleep,” says Doman. “Too much stops natural melatonin production in the brain, making it harder to fall asleep and stay asleep.”

6. Provide mental and physical stimulation during the day
Make sure your child has opportunities to exercise her brain and her body during the day. That will tire her out so she can fall asleep when bedtime rolls around.

7. Install a monitor
If you have concerns about your child’s physical well-being overnight, install a monitor in the child’s room that will alert you should a serious problem arise.

8. Make sleep medications a last resort
Give behavioral techniques a serious try before considering pharmaceutical sleep aids. If after trying the techniques listed here, you’re convinced that only medication will do the trick, consult with your pediatrician. Your doctor may suggest starting with herbal treatments such as melatonin or valerian root, which have been shown to be safe and effective.

Ableism — Merriam-Webster’s Unabridged Dictionary defines the term as “discrimination or prejudice against individuals with disabilities.” Stop Ableism.org provides a more detailed definition: “The practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities. A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.”

As we begin a new year, Enabling Devices provides some suggestions on how to fight ableism.

1. Learn about Ableism

“Oftentimes people are ableist without realizing it,” says disabilities activist Kristen Parisi. “When you tell a disabled person you’re ‘praying for them,’ that implies that there’s something wrong with their disability. Learning about what ableism is will help you change your own behavior.” To get started, Parisi recommends reading disabled activist, media maker, and consultant Alice Wong’s new book, “Disability Visability.” Other good reads about ableism include: “Nothing About Us Without Us: Disability Oppression and Empowerment,” by James I. Charleton; and “No Pity: People with Disabilities Forging a New Civil Rights Movement,” by Joseph P. Shapiro.

2. Hire people with disabilities

In recent years, business owners have begun to recognize the value that people with disabilities bring to their businesses. According to Business.com, hiring people with disabilities can “increase your profit margin,” “diversify your company culture,” “increase company diversity,” and “decrease turnover.” At a time when American businesses are struggling to find qualified candidates, hiring individuals with disabilities would provide “access to a talent pool of more than 10.7 million people with diverse strengths, leadership styles and ways of thinking.” Finally, hiring people with disabilities gives employers federal and state tax incentives.

3. Follow disabilities activists on social media

Whatever you feel about social media, it has given many disabilities advocates a platform where they can express their views about disability rights, as well as everything else. Here are just a few social media influencers you may want to follow:

• • • Tiffany Yu (@imtiffanyyu) founder of Diversability, “an award-winning social enterprise to rebrand disability through the power of community.”
    • Judy Heumann (@judithheumann) is a Senior Fellow at the Ford Foundation, a disability rights advocate, and a former diplomat.
    • Andrea Dalzell, BSN, RN is the first nurse in New York State to use a wheelchair. She shares her wisdom on Instagram @TheSeatedNurse
      Facebook @AndreaDalzell and @MsWheelchairNY2015
    • Antwan Tolliver, a fashion designer and gunshot victim paralyzed from the waist down. @freedomisfly
    • Richard Corby, creator of the Wheels2Walking YouTube channel which features educational and entertaining videos for wheelchair users.

4. Push for greater accessibility

Advocate for those with disabilities by being aware of your surroundings and noticing whether they accommodate people with disabilities. As Noah Rue writes for Rolling Without Limits.com, “ask questions, such as: “How can someone without full mobility struggle with bus stops? Construction zones? Schools? Restaurants? …What can be done to alleviate those difficulties?”

5. Don’t use ableist labels and expressions

Words matter! It should go without saying that the “R-word” is unacceptable. But other phrases such as “confined to a wheelchair,” or “that’s lame,” “the blind leading the blind,” etc. can be offensive to people with disabilities.

6. Don’t assume that individuals with disabilities must be chronically depressed

“Just because someone has a disability doesn’t mean he or she is living a life that’s any less than an able-bodied person’s,” writes Katie Dupree for Mashable. “Like any able-bodied person, people with disabilities adapt to accommodate their own experiences. But that’s not something that makes a person living with disabilities less fortunate or clearly miserable.”

In March 2017, to celebrate Cerebral Palsy Awareness Month, Enabling Devices paid tribute to Karen Killilea and her mother Marie Killilea in a blogpost about Marie’s New York Times best-selling books, “Karen,” and “With Love from Karen.” The books, written in 1952 and 1963 respectively, tell the true story of Karen, a girl with cerebral palsy and her trials, tribulations and triumphs in an era when little was known about the condition and many in the medical field believed children like Karen should be institutionalized and kept apart from their families.

On December 18, 2020, the New York Times published Karen Killilea’s obituary. She died Oct. 30, 2020, in Port Chester, New York, at the age of 80. As Karen’s sister Kristin Viltz told the New York Times, the cause of her death was “a respiratory condition that led to heart failure.”

Karen was born in 1940 to Marie, a homemaker and James, a telephone company executive who lived in Rye, New York. At the time of her birth, Karen was three months premature and weighed less than two pounds. As she failed to reach developmental milestones, Karen’s parents consulted with doctors who were overwhelmingly pessimistic about the baby girl’s prognosis. According to Marie Killilea’s 1991 obituary, doctors told her and her husband James that their daughter’s ‘case was hopeless.’ They said that ‘Karen had no intellect, could never learn to walk or communicate with others.’ But Marie knew they were wrong.”

Indeed, Karen, who was finally diagnosed with CP at the age of 3, went on to achieve a great many things. Through a rigorous training regimen conducted by her mother, Karen learned to walk with crutches (though she eventually switched to using a wheelchair), swim, and attended a local Catholic school. She worked for many years as a receptionist at a Catholic retreat center, was a dog obedience trainer and lived independently throughout her adult life. Her mother’s books and Karen’s accomplishments brought hope to millions of families with disabled children.

In addition to her best-selling books, Marie was a tireless advocate for people with cerebral palsy. She founded the Cerebral Palsy Association of Westchester County as well as a national CP organization that later became United Cerebral Palsy.

These organizations have a special connection to Enabling Devices. It was during a consulting position with UCP in Nassau County, Long Island, in 1974, that our founder Steven Kanor first became aware of the need for adaptive toys. As Steve’s 2015 obituary reads: “Upon arriving at UCP, he was amazed to find that the children had some basic biofeedback equipment, but no toys. “Toys,” he said, “are children’s tools. Without them they cannot grow and develop. Play is the job of childhood.”

Four years later, Steve founded Toys for Special Children (now Enabling Devices), “a business devoted to providing children with disabilities ‘maximum delight’ while at the same time helping to develop cognitive and mobility skills.”

To this day, Enabling Devices enjoys a special relationship with Cerebral Palsy of Westchester (CPW). Therapists at CPW routinely share their expertise and test our toys with their students. In fact, occupational therapist Tina Weisman, a longtime CPW employee, private practitioner and doctoral candidate recently joined Enabling Devices as a consultant for new product design, telehealth and online learning.

Looking for a great read during the cold weather months? Pick up one of Marie’s books. She also wrote “Wren” an abridged version of Karen’s story for children in 1981.  “Karen” and “With Love from Karen,” are available on eBook and used print copies may be found on eBay and elsewhere online.

When Marc Stecker received a diagnosis of primary progressive multiple sclerosis in 2003, he “dove head first into MS research.” But he didn’t stop there. Stecker, a New York City resident, created an award-winning blog to share his findings with other MS patients as well as MS researchers and clinicians. Now, the 57-year-old former punk rock ‘n roller and director of DVD production for a renowned international music company, is being honored for his leadership efforts with an award that’s named for him.

The Marc Stecker Award was conceived by the Buffalo Neuroimaging Analysis Center (BNAC) at SUNY Buffalo, “to foster innovative and patient-centric research by BNAC researchers seeking a cure for multiple sclerosis.”

Stecker was a 39–year-old newlywed when he first noticed he was limping. “Looking back, there were symptoms before that, but it was the limp that sent me to the doctor,” Stecker recalled. “I received my official diagnosis a year later and I stopped working less than four years after that.”

Stecker became active on MS forums on the Internet, where he started posting about what he was learning about the disease. “I found that I had a facility with translating medical speak into English,” said Stecker. “I was posting a lot because there was so much research. I almost considered it a job. People on the forum started saying, ‘You should really start a blog. This is useful information.’”

By the summer of 2008, Stecker needed a wheelchair to get around. He started his blog — Wheelchair Kamikaze — in early 2009. “The blog started as a repository for my pictures and videos. I mounted a camera to my wheelchair and rode around Manhattan taking photos and videos. Later, I started writing about life with MS and medical research. I never realized anyone other than friends and family would see it,” Stecker said.

But he was wrong. Stecker’s blog has won various rewards and has garnered recognition from the online MS community and beyond. “It is read by patients and neurologists,” he says. To date, WheelchairKamikaze.com has received almost 4 million page views. Due to worsening MS symptoms, Stecker said he rarely posts on the blog these days. Yet blog visitors can still find fascinating information; scenic and hilariously narrated videos of Stecker’s travels around the Big Apple; and honest, hard-hitting commentary about America’s healthcare system, and the brutal realities of living with a chronic, debilitating illness.

Stecker’s blog and MS advocacy has connected him to patients, doctors and researchers from all over the world and he has made countless friends in the MS community.

Stecker’s notoriety has earned him interviews with CNN commentator and neurosurgeon Dr. Sanjay Gupta, NPR, and Multiple Sclerosis Discovery: the Podcast of the MS Discovery Forum.

“Having MS and starting the blog, woke up my inner science nerd. I went to a science high school and I was a geeky science person but I never pursued it before,” Stecker noted.

Due to his leadership in the MS community, Stecker became a founding member of BNAC’s Advisory Council in 2010. “It’s me and about a dozen other patients. We have quarterly meetings by Zoom and the researchers fill us in on the latest projects and we give input on what directions research should take. It’s a synergistic relationship,” said Stecker.

“Through the years, I’ve given a lot of input. I pushed them to study the relationship between Epstein Barr virus and MS. I really stressed that one of the keys to finding a cure or a treatment for MS is finding out the role Epstein Barr plays in genetics and autoimmunity. So, they started studies on ways to image [neurological] inflammation associated with Epstein Barr and MS.”

About a year ago, Stecker received a phone call from someone at BNAC. “The person said they would be starting an award named for me that would be going to the most promising graduate student, research associate, etcetera. I was very proud and flabbergasted.”

The first Marc Stecker award was given out in early December 2020 at BNAC’s online holiday party. The award — which includes a $1,000 cash grant and a framed photo taken by Stecker during one of his wheelchair rides around Manhattan — went to a “brilliant Ph.D. candidate from Macedonia,” said Stecker. Additionally, the winner received a letter from Stecker.

“The letter says that the primary objective of the winner should be to put themselves and every other MS researcher and clinician out of a job by eradicating MS. When researching any disease, it’s easy to get caught up in the intellectual and academic puzzles. But remember there are people involved who are suffering miserably. At the heart of every great researcher is a humanitarian. Don’t separate the research from the people.”

After a three-year courtship and a successful YouTube venture, Cole Sydnor, 25, and Charisma Jamison, 26, the stars of the YouTube Channel, “Roll with Cole and Charisma,” recently tied the knot during a small outdoor wedding in Richmond, Virginia. Due to COVID-19, health and safety precautions were taken at the event and most of the wedding guests watched the ceremony offsite on a livestream.

An interabled (he has a physical disability and she does not) and interracial couple, the two met when he was a patient at Sheltering Arms Physical Rehabilitation Centers in Richmond, and she was a rehab technician there.

Sydnor became a C5/C6 quadriplegic after a diving accident in 2011. The accident caused him to lose the use of his hands, torso and legs, with only some degree of function in his arms, shoulders and wrists. Though Jamison and Sydnor realized they would face challenges, which did not stop them from falling in love.

As Jamison told the New York Times Vows columnist Robbie Spencer, “It was very easy to look past physical limitations being in my career. And the fact that Cole was super attractive didn’t hurt.” Said Sydnor to The Times: “As an interabled and interracial couple, we’re proof that love can be found anywhere.”

When the couple began dating, they were confronted with many questions about what it was like to be in an interabled relationship. That is how “Roll with Cole and Charisma” got started. Instead of being annoyed by the curiosity of others, the couple began posting videos answering their questions and addressing the issues they face, from physical intimacy to how they manage transitions from the wheelchair to the car, to welcoming a new service dog, to making their home accessible, to being in an interracial relationship. Sydnor’s positive attitude and great sense of humor and Jamison’s vivacious, warm personality have made their channel an Internet sensation. Currently their channel has more than 200 episodes and 531,000 followers— enough to become YouTube partners who are able to earn income from advertising on the channel. In addition to running their channel, the couple also has a freelance production enterprise.

According to the Times article, Jamison and Sydnor have also become disability advocates. Together they have presented a Ted Talk about their experiences, and Sydnor addressed an audience at Google headquarters about the need for universal design on behalf of the Christopher & Dana Reeve Foundation.”

While individuals with disabilities still face stigma when it comes to dating and marriage, slowly, the landscape is changing. According to WAGS of SCI (Wives and Girlfriends of Spinal Cord Injury) cofounder Brooke Page, “In today’s day and age, social commentary surrounding disability is beginning to slowly change for the better. No longer is our community shunned or excluded as frequently, and inclusion is becoming a top priority worldwide. Acceptance is booming; minds are changing; new attitudes are running the show. Now is the perfect time for the backward thinking (that still does exist, unfortunately) to be left in the dust, and for people to see others for who they are, not for what they may seem to be by their appearance. It’s time for a change to be made — permanently.”

It’s a universal concern of special needs parents: What will happen to my child after I am gone?

About 20 years ago, a group of parents in Half Moon Bay, California, came up with a creative solution. The parents—whose children were all Special Olympics athletes—envisioned a unique affordable housing community in which their adult children could live independently among their friends, working at jobs in the immediate neighborhood and receiving whatever supports they require.

Earlier this month, that same group of parents and their now grown children were on hand to witness the historic groundbreaking of the residential community—Big Wave.

According to Fiona Kelliher, a reporter with the Palo Alto Daily News, “The finished project — built under [parent Jeff] Peck’s nonprofit Big Wave—will house 33 adults with disabilities, with the potential to expand. Commercial businesses, along with service provider One Step Beyond, will be built alongside the residential community to both subsidize the cost of the units and provide employment opportunities for residents.”

What took so long? According to Kelliher, the project was sidetracked by a variety of obstacles. There were several environmental hearings and 30 public hearings before local officials approved the project. In addition, funding for the $23 million project was challenging. “Peck and a business partner bought and donated the parcel of land for the project, but otherwise relied on funding from the original group of families, plus grants and donations from philanthropists around the Bay Area,” wrote Kelliher.

The community is expected to be completed in approximately 18 months and 23 of the residential units, which sell for around $60,000, are already spoken for. Kelliher notes that the typical cost for a supported residential unit is closer to $300,000. And even if residents could afford to pay $300,000, they would be hard pressed to find any vacancies. Waiting lists in San Mateo County, where Half Moon Bay is located, are anywhere from one to five years long.

Peck is hoping Big Wave will become a model for similar residential communities around the nation.

In late January, the American Library Association (ALA) announced the 2020 winners of the Schneider Family Book Awards. The Awards, established by Dr. Katherine Schneider and her family in 2004, “honor an author or illustrator for the artistic expression of the disability experience for child and adolescent audiences,” according to the ALA.

Dr. Schneider, who has been blind since her birth in 1949, grew up at a time when people with disabilities faced significant obstacles in employment, public accommodations, and education. Getting access to books in Braille was challenging.

“The librarian at the Michigan Library for the Blind was my hero,” Schneider told a gathering of librarians at the ALA Conference in 2004. “He sent me books in Braille and on records from the Library of Congress collection. … That special librarian and my mother, who read me many books that were not available in Braille or on records, whetted my thirst for knowledge.”

In the 1950s, public schools were not mandated to mainstream students with disabilities. Schneider’s mother fought for her daughter’s right to attend public schools in Kalamazoo, Mich., and her perseverance paid off. Schneider became the first blind student to graduate from her school district, the valedictorian of her high school class and a merit scholarship winner. After college, Schneider earned a Ph.D. in psychology from Purdue University. She practiced psychology for 30 years.

Here are the winners of this year’s Schneider Family Book Awards:

Young Children Winner
“Just Ask: Be Different, Be Brave, Be You” (Philomel Books, Sept. 2019)
Written by Supreme Court Judge Sonya Sotomayor and illustrated by the award-winning Rafael Lopez, this picture book celebrates the differences we all have. As a youngster, Judge Sotomayor was diagnosed with diabetes, and she uses her experiences with the disease to relate to children with different abilities. This book is also available in a Spanish language version.

Young Children Honor Winner
“A Friend for Henry” (Chronicle Books, Feb. 2019)
Written by Jenn Bailey and illustrated by Mika Song, this book tells the story of Henry, a young boy with autism who’s looking for a friend who understands his unique way of seeing the world.

Middle Grade Winner
“Song for a Whale” (Random House/Delacorte Press, Feb. 2019)
In addition to winning the Schneider Award, Lynn Kelly’s “Song for a Whale” is also a New York Public Library Best Book of the Year. “Song for a Whale” introduces readers to 12-year-old Iris, a tech wizard who happens to be deaf. When Iris learns about Blue 55, a hybrid blue/fin whale who is unable to communicate with other whales because of the unusual frequency of its voice, she identifies strongly and is determined to compose a song in the frequency that Blue 55 can hear.

Middle Grade Honor
“Each Tiny Spark” (Koikla Penguin Young Readers Group, Aug. 2019)
Award-winning children’s author Pablo Cartaya tackles both attention deficit hyperactivity disorder (ADHD) and post-traumatic stress disorder (PTSD) in his new and highly acclaimed book.

Teen Honor Winners
“The Silence Between Us” (Blink, Aug. 2019)
Called “eminently un-put-down-able” by National Public Radio, Alison Gervais’ new young adult novel tells the story of Maya, a teenager who recently transferred from a deaf school to a hearing school and must deal with the typical problems of adolescence as well as stereotypes about her deafness.

“Cursed” (Charlesbridge, June 2019)
Karol Ruth Silverstein’s new young adult novel introduces us to Ricky, a young teen trying to handle her parents’ divorce, her sister’s departure for college as well as her diagnosis with a chronic illness.

In recent years, the popularity of podcasts has soared. According to statistics compiled by Podcast Insights.com, as of 2019, 51 percent of people in the United States report they have listened to a podcast. Currently, Podcast Insights estimates there are 750,000 podcasts and 30 million episodes available on the internet. Still, some of us remain confused about what podcasts are and why many people prefer listening to podcasts to consuming other types of digital media.

For the uninitiated, podcasts are digital media files, usually audio, but sometimes video, that can be downloaded or streamed on one’s smartphone, iPad or computer. Podcasts tend to feature in-depth reporting on a wide range of topics that many listeners believe they cannot find elsewhere. Another advantage?  Podcasts can be heard on demand, in accordance with the listener’s schedule.

Here are some of the top-rated podcasts on topics that may be of interest to individuals in the disabilities community.

Disability Matters
Hosted by Joyce Bender, this podcast focuses primarily on employment issues facing people with disabilities.

The Accessible Stall
Join hosts Kyle Khachadurian and Emily Ladau as they delve into topics of interest to the disabilities community from their diverse perspectives.

Ouch: Disability Talk
Simon Minty, Kate Monaghan and the Ouch team take you to “the place where real disability talk happens” on this BBC podcast.

 Disability Visibility
This podcast, created by disability activist and founder of the Disability Visibility Project, Alice Wong, covers a variety of cultural, political and media-related topics through “a disabled lens.”

Two Disabled Dudes
The hosts of this podcast, Kyle Bryant and Sean Baumstark, have a rare condition called Friedreich’s ataxia that effects their balance and coordination. Despite these challenges, Bryant and Baumstark have become long-distance biking champions. Their podcast is about breaking barriers and fulfilling one’s dreams.

Chronically Chilled
This podcast explores issues related to chronic illness, disabilities and mental health in a discussion-based format.

Assistive Technology Update with Josh Anderson
Get current with the latest assistive technology advances for people with disabilities in this weekly podcast.

Inclusive Education Project Podcast
Special Education and Civil Rights attorneys, Amanda Selogie and Vickie Brett host this weekly podcast about education reform and disability rights.

Disability: A New History
This 10-part series hosted by Peter White and created by the BBC, uncovers the largely forgotten histories of people with disabilities who lived during the 18^th and 19^th centuries.

Disarming Disability
Hosts Nicole Kelly and Sarah Tuberty speak to experts on a variety of topics of interest to people in the disabilities community. Recent podcasts have focused on being a good advocate, and portrayals of people with disabilities in the media.

Happy listening!