Kulture City

Autism is one of the most common developmental disabilities, yet families who receive the diagnosis can feel isolated, afraid and unsure how to best help their child.

 

UAB and Children’s of Alabama physicians Julian Maha and Michele Kong, whose son was diagnosed at the age of 4, experienced the same emotions. “It a hard, challenging journey, navigating the system and finding the right resources for your family,” Kong says. “It’s also finding how best to integrate your child into society. Really, that’s the biggest challenge.”

 

That’s why in 2013 they founded KultureCity, a nonprofit group with the overall mission of changing the culture one city at a time. Maha is founder and CEO, and Kong is co-founder and chief medical officer. “People are aware of autism, but they are not sure what it means for these kids to have these challenges,” she says. She recalls a time when their son, who has sensory issues, had a meltdown in a barbershop. Another person there grabbed her son, shook him and yelled at her, reprimanding her for his behavior.

 

“If you have a two-year-old, people tend to accept a meltdown as part of being a toddler,” Kong says. “But if you have an older child with sensory issues, the public does not show the same acceptance. Our son is almost 9 now. So many families are already guarded and nervous when they go out in public to begin with, and so if anything happens, many don’t go out again. That’s when we knew we wanted to provide tangible help for families.”

 

KultureCity works to help businesses and community organizations better understand the needs of people with autism. One of the group’s most recent sensory outreach activities is at the Birmingham Zoo. The staff has been trained to recognize and handle many situations, including knowing what to do if their find a child who has wandered away. The group also has provided the zoo “sensory bags” with items such as noise-cancelling headphones and weighted lap pads that help the child feel more stable and secure on rides and during performances. Families can ask for one at the venue.

 

Other sensory-friendly venues in the area include McWane Science Center, UAB Alys Stephens Performing Arts Center and Post Office Pies, a local restaurant. Businesses can apply to become designated “sensory-friendly.”

 

Another major service offered to families is LifeBOKS, a kit that helps individuals with autism who are more prone to wandering and accidental drowning, among other dangers. The kit includes:

 

• Window and door alarms that sound when a door or window is opened.
• A BuddyTag, a child safety device that has out-of-range alert, a water safety alert; a panic alarm for a child to alert the parent and personal ID to help reunite a lost child with parents. It uses Bluetooth and is not a GPS.
• SafetyTats, temporary child ID “skin stickers” that you customize yourself with phone numbers and other information.
• SmartKidsID, a wearable shoe ID that contains child and medical ID with a 24/7 toll-free hotline to connect to a child’s ID profile to help identify a missing child. It can be worn on shoelaces, Velcro, sandals and more.

 

Other services include: giving touchscreen tablets to children to help them communicate (new research has shown that using iPads and other tablets can help non-verbal children maximize language skills); toys, respite care, free art and music camps and free nights at other venues; scholarships for families; and helping children in other countries who are shunned, hidden or abused because of their disability.

 

While KultureCity does not directly provide such materials to schools, if a family needs materials to help their child in the classroom, the group can provide help, Kong says. “The biggest need will always be educating staff, whether it is teachers, employees or volunteers to react, interact and problem solve,” she says.

 

While KultureCity is based in Birmingham, its influence is far-reaching. More than 15,000 individuals throughout the U.S. have been helped, and it is considered one of the top-rated nonprofits in the country. It has been cited by major companies such as Microsoft for its work. There are branches in New York, Boston and other major cities, along with the country of Uganda.

 

KultureCity provides services free to families and is primarily funded through private donations and grants. It also has a major fundraising event, KultureBall, each August that attracts volunteers, celebrities and families. “It warms my heart to see so many families we have helped directly help others directly through KultureCity,” Kong says. “We connect with them, we feel empowered, we feel like a family.” Businesses and groups also can donate iPads and other tablets, along with donations for all the other items offered free to families. Sponsors also are welcome. The KultureCity team is made up of volunteers.

 

“We are working to help our children fit in this world, to inspire the community to join us in creating a world where all individuals with autism can be accepted, included and fulfill their potential,” Kong says. Coming up next is KCFit, a program to promote fitness and wellness in families, Kong says.

 

For more information, go to http://www.kulturecity.org. To best contact the organization directly, send an email to support@kulturecity.org. The group also is on Twitter, Facebook and Instagram.

 

Lori Pruitt is associate editor of Birmingham Parent.