Parents of kids with disabilities can face a lot of challenges, from caring for their child’s basic needs to carving out time to learn about their disability to navigating a complicated system of services.
This is why nonprofits that help kids with disabilities are so crucial. These organizations provide much-needed services for children so they get what they need for their development and also get exposure to activities that may be more challenging for families to figure out on their own.
As a parent of two children with disabilities, I’ve seen firsthand how families can benefit from some amazing nonprofits, including the two below.
Sound Start Babies
My younger son was born with hearing loss and fitted with hearing aids when he was a baby. He was the first person in our family to have hearing loss, something that is very common, since 90% of deaf children are born to hearing parents.
We didn’t know the best way to support him and, luckily, we were referred to Sound Start Babies, a program that offers services for babies and toddlers with hearing loss and their families, from birth to age 3. The staff at Sound Start Babies consists of a group of professionals, including Teachers of the Deaf, speech language pathologists, an audiologist, occupational and physical therapists, social workers, classroom paraprofessionals, and Spanish language interpreters.
“There is a critical window of brain development that exists from birth to 3 years of age,” says Kayley Mayer, program coordinator at Sound Start Babies, which is based in Mountain Lakes, New Jersey. “If this opportunity is missed, it can have irreversible effects on global development…. Hearing loss impacts brain development, and if children are not given the tools they need to be successful, they will not be able to function like their hearing peers.”
How they help
After they provided my son with his first evaluation, both a speech and occupational therapist were assigned to come to our house each week. Then, when he was 18 months old, he began attending their nursery program, where he was supported with a great listening environment and staff that understood his needs.
Additionally, they taught my husband and I how best to support our son by allowing us to sit in on therapy sessions so we could carry over exercises during the week. They also explained different types of listening environments and how they might impact our son. “Families are their child’s first and best teacher and have the power to make the most of daily routines through parent coaching methods from Sound Start Babies,” Mayer says.
Making an impact
Carrying those lessons over at home made a big impact in my son’s development. He never missed a milestone and was a very chatty toddler.
When my son was preschool age, he was fully mainstreamed in our local school district and is now moving up to middle school. He plays the cello in the honors orchestra as well as in a regional orchestra, loves to sing and dance, excels in school and has a lot of friends. My family is thankful we found Sound Start Babies to help him get that early education.
Sound Start Babies recently began providing telehealth services to the mid and southern regions of New Jersey, where Mayer says there is a lack of specialized providers. They now proudly serve all 21 counties.
At their recent annual benefit, three students from the first nursery classroom, which opened in 2010, were in attendance. “The students are now 17 [years old] and getting ready to make decisions about their college education,” Mayer says. “It was really amazing to see them all grown up and to admire the people they’ve become.”
While the program is supported by the state of New Jersey, “about two-thirds of the cost to run the program relies on grants and philanthropic support,” Mayer says. And they’re always looking for more financial help.
Best Day Foundation
Best Day Foundation is a nonprofit that supports children with autism, Down syndrome, cerebral palsy, blindness, cancer, spinal cord injuries and other physical and developmental challenges by providing them with a buddy who guides them through a day of activities at the ocean, including surfing, bodyboarding, kayaking and snow sports.
How they got started
The program was initially created by Alexis and Lake Downham in 2008 when Lake, a Coast Guard Rescue Swimmer and avid surfer, tried to get his wife, Alexis, a special education teacher, to learn how to surf. Lake researched tandem surfing and was intrigued by an organization he liked in California called Ride a Wave, which supported kids with disabilities through ocean activities. He reached out to them, made a connection and, with their support, decided to recreate their model on the East Coast.
“The reason we named it Best Day was because their participants, whenever they were out there, they would always say, ‘This is the best day ever!’” says Alexis Downham, Best Day Foundation founder and president.
Best Day Foundation’s first event was held in 2008, where they hosted 15 participants at a beach in New Jersey. Fifty volunteers came out that day, 20 of them helpers from California and 30 who were friends and family of the Downhams. The events quickly gained popularity and have continued to grow over the years.
Today, they host 10 events each year, six in New Jersey, one in Florida and three in Virginia, as well as two wave pool events.
There are no limitations to who can participate in their beach day events, and the beach buddies, who are volunteers of all ages, give parents the ability to step back and take a break with caring individuals handling their duties for a couple of hours.
Creating connections
“These are the kinds of events that just bond people from all different backgrounds, all different ages,” Downham says. “We have volunteers that are as young as 11 and 12 and as old as 70 that are pairing with kids that are from 4 to 24.”
My middle son, who has cerebral palsy, participated in several Best Day events where he had a blast adaptive surfing in the ocean. The group was welcoming, inclusive and knew exactly how to accommodate kids with a variety of disabilities.
One year, I participated with my son and got to sit in the adaptive sit-ski with him on my lap. Around 20 volunteers helped us catch the current and ride the waves to the shore before turning us around to do it again. We both had a blast doing something that would have been difficult for us to figure out on our own, and I loved seeing my son so easily included.“The relationships [that develop] are so powerful,” Downham says. “Even though most of the [participants and volunteers] are only together for a day, it really shapes who they are after that event. It’s really a life-changing experience.”
Photo by Sound Start Babies
