Make-A-Wish® South Carolina Grants Wishes for Rewarding Sensory Experiences

Child in Her New Sensory Room donated by Make-A-Wish South Carolina

As a wish manager for Make-A-Wish® South Carolina, Katlyn Gould is a lot like a fairy godmother. She, her colleagues, and Make-A-Wish volunteers spend their days granting wishes for critically ill children ages 2 1/2 to 18.

Founded in 1984, Make-A-Wish® South Carolina granted 184 wishes in FY 2017, and the nonprofit is on track to grant 200 wishes in FY 2018. In the past six years, the nonprofit organization has granted 950 wishes to children across the state. Make-A-Wish® South Carolina is entirely donor-funded and .79 cents of each dollar donated goes directly toward wish-granting.

While many “wish kids” — 31 percent — wish for trips to Disney parks or cruises and others (13 percent) wish to meet celebrities and professional sports players, Make-A-Wish South Carolina® also grants wishes for in-home sensory rooms. Recently, the nonprofit began consulting with Enabling Devices for advice on outfitting sensory rooms for some of their wish kids.

Sensory rooms are spaces where children and adults can explore their environments through visual, auditory and tactile experiences,” explains Karen Gallichio, Product Development Specialist at Enabling Devices. “They offer highly individualized experiences and serve individuals with a variety of disabilities including autism spectrum disorders, developmental disabilities, post-traumatic stress disorders, cerebral palsy and sensory processing disorders.”

There is great variability in the design of sensory rooms and they can be designed based on the needs of the particular individual or individuals who will be using them.  Typically, they include any combination of products including swings, ball pits, LED light illuminators, bubble tubes, gel pads, bead chain curtains, weighted vests, musical and tactile toys, sensory wall panels, aromatherapy fans and comfortable seating such as beanless bag chairs.

“Many of our children who wish for sensory rooms are non-verbal,” says Gould. “Some of the things that make them the happiest are sensory experiences. So, we come in and create them.”

Before locating Enabling Devices, Gould says Make-A-Wish staff members would purchase sensory items based on what children’s parents believed their children would enjoy. “Parents know their child best and can best assess what the kid will like. They might say, ‘no bright lights’ or ‘this kind of music.’” That was helpful but Make-A-Wish staff members weren’t necessarily familiar with all the sensory items on the market, nor were they sure of the ideal ways to set up sensory spaces.

“Since finding Enabling Devices and working with Karen [Gallichio], who is so knowledgeable about the products,” says Gould, “we’ve been able to work as a middleman, connecting the parents with Enabling Devices to create the perfect space for each child.”

Gould also appreciates the personalized sensory room design services offered by Enabling Devices. After clients complete a questionnaire that provides Enabling Devices staff with information about the purpose and objectives of the sensory room, the population to be served by it, the floorplan, budget and timing for the project, consultants get to work creating a design, and layout for the space and selecting the most appropriate toys, equipment and devices to maximize the room’s impact. A 3-D computer generated model gives clients a sense of what the room will look like once it’s completed.

Crystal Alifanow, Communications & Community Relations Manager for Make-A-Wish® South Carolina, says the staff will frequently receive positive feedback from the parents of children who’ve received sensory rooms. “Katelynn, a 4-year-old wish child who suffers from a chronic lung disease, absolutely loved the Tickle Tube,” says Alifanow. “Every time she stuck her hand in, she had this gigantic grin! Parents will often say things like, ‘We haven’t seen our child smile like this in months!’ This also helps the families. They revel in their child’s joy and it helps them to bond,” Alifanow says.

“One of the biggest misconceptions people have about Make-A-Wish is that we grant wishes for only terminally ill children. That’s not our mission. Our mission is building hope and strength. Many kids go on to beat the odds. Wishes provide strength and hope. They can be a turning point in treatment,” says Alifanow. Gould can testify to this. Once upon a time — before becoming a wish manager — she was a wish kid.

“When I was 14, I was diagnosed with cancer,” says Gould. “I had a wish to meet [then] Boston Red Sox centerfielder Jacoby Ellsbury. I experienced the power a wish can have for a child and a family… I’m grateful that kids can share the memories of their wishes with their families and grateful that today, I can help other children have their wishes granted.”

For additional information about Make-A-Wish® South Carolina, visit sc.wish.org. For information about creating a sensory space in your home or facility, visit enablingdevices.com/sensory-room/.

Seven Organizations Helping Harvey Victims with Disabilities

Helping Hurricane Survivors

When a catastrophe such as Hurricane Harvey strikes, the consequences are disastrous for everyone impacted. For people with physical, psychological and developmental disabilities, the situation can be even more dire. Just imagine: trying to maneuver a wheelchair through five feet of water; being blind and having to climb a ladder to safety; having autism and losing your home and the prized possessions that make you feel secure. These are just some of the challenges that people with disabilities are facing in the wake of Hurricane Harvey.

Amidst the devastation in Texas, nonprofits that advocate for people with disabilities are doing their best to ensure that they aren’t left behind. Here are some that are doing good work or collecting money for people with disabilities. You may wish to support them at this critically important time.

Portlight Strategies Inc.
Portlight and its partner, The Partnership for Inclusive Disaster Strategies has been working on behalf of people with disabilities “to promote inclusiveness in disaster preparedness and response plans and to demand provisions for transportation and shelter accessibility,” since 1997.   During Hurricane Sandy in 2012, the organization worked with disabled hurricane survivors for 18 months, helping them to replace lost medical equipment, rebuild ramping, and more. Portlight provided similar support for disabled victims of flooding in Louisiana in 2016. Portlight also runs a program called Getting It Right which offers workshops and conferences on issues related to inclusive disaster preparedness and advocates for accessibility in housing and transportation.

Trach Mommas of Louisiana
This nonprofit, geared specifically toward parents, caregivers and individuals with tracheostomies, is collecting and distributing medical supplies to Harvey victims with complex medical needs, those who are dependent on technology or immune compromised.

 National Federation of the Blind/Texas
The local affiliate of NFB has started a Hurricane Harvey Relief Fund for blind and low vision Texans affected by the storm.

AAC Relief
This organization is aiding for hurricane victims with speech and language disorders who use augmentative and alternative communication devices.

Texas Diaper Bank
The Texas Diaper Bank has created a disaster relief fund to provide diapers to babies, people with disabilities and the elderly affected by Hurricane Harvey.

Texas School for the Deaf Foundation
This Austin-based school has started a Hurricane Harvey Relief Fund to benefit students who have been displaced by the storm.

Autism Society of Texas
This organization has set up its own Hurricane Harvey Relief fund for families affected by autism.

 

 

Got Wheels?

“Wheelchair bound.” “Confined to a wheelchair.” Referencing wheelchair users like this is not only outdated and offensive, it also reflects a lack of understanding. “People are not ‘confined’ to their wheelchairs,” say the folks at the Christopher and Dana Reeve Foundation, “they are in fact liberated by their wheels. … A wheelchair offers people access to work and shopping or any other travel outside the home.” Sadly, an estimated 100 million people in developing nations across the world who need wheelchairs, are too poor to afford them. But thanks to Dr. Don Schoendorfer and the Free Wheelchair Mission, the humanitarian, faith-based nonprofit he founded, they now have hope.

Schoendorfer’s journey began many years ago on a visit to Morocco. There, he saw a woman who was unable to walk but had no wheelchair, drag herself across a busy intersection. He was deeply impacted by what he saw, and eventually Schoendorfer, a biomedical engineer and inventor, left his successful career to pursue a higher calling: He wanted to help people like the woman in Morocco by designing a wheelchair that was “basic, inexpensive and durable,” enough to withstand the rugged topography of many developing countries.

In 1999, Schoendorfer designed his very first wheelchair. Per Disabled World, it was “essentially a plastic lawn chair with mountain bike tires…” Since then, “the wheelchairs have evolved to include two additional designs, including a foldable wheelchair. All three designs are available to recipients, and depending on the needs of an individual, the most appropriate is given for free.”

This past June, the Free Wheelchair Mission celebrated the delivery of its one millionth wheelchair. The chair went to a 12-year-old Peruvian girl who lived in a far-flung Andes village.  Prior to receiving the wheelchair, the young girl had to be carried from one place to another. However, she would soon be too big to be carried. As she grew bigger, her prospects for the future grew increasingly bleak. Fortunately, receipt of a wheelchair drastically changed the trajectory of the girl’s life.  “Footage of a recent trip to present her with the millionth wheelchair showed her crying, laughing, and applauding her gift,” according to a press release issued by the Free Wheelchair Mission. “Her future is now bright, as she can return to school and play with her brothers.”

To date, the organization has provided wheelchairs to people in 93 countries. Each wheelchair is produced and delivered for a total cost of $80. Up next, Schoendorfer aims to deliver another million wheelchairs by 2025.

To learn more, visit freewheelchairmission.org.