Celebrating Down Syndrome Awareness Month

October is Down syndrome awareness month. In support of those around us who have Down Syndrome (DS), disabilities, and special needs, I reached out to both regional resources as well as state resources and would like to share with the community about it.

Donna Davidson of Eagle River was one of the founders of the Alaska Down Syndrome Network in 1986, along with Evelyn Moss of Anchorage. Donna has remained an active board member ever since.

“The Alaska Down Syndrome Network began with a few mothers getting together in 1986,” Donna recalled. “Twelve families came to the first potluck. The main emphasis for the group was connecting—to other families, to current medical and educational information, and to national organizations.”

She explained that many children and adults with Down syndrome (DS) have a slower processing time than neurotypical individuals. Aside from treating them with kindness and respect, she noted, “It is crucial to give them time to think about what you said and to formulate an answer. My son appears non-verbal to many because he is slow to put words together, or people think he doesn’t want to talk to them. Alex eventually gives up trying because he knows other people won’t wait for him. At home, he can be quite verbal when he wants.”

To support individuals with DS, disabilities, or special needs, Donna’s top piece of advice is simple: “Become friends!” She emphasized talking to them in a normal tone of voice rather than talking down to them as if they were young children. It is equally important to be considerate of their emotions. “Not all children and people with Down syndrome are happy all the time! They have emotions and good days and bad days, just like anyone else.”

When it comes to Down Syndrome Awareness, Donna emphasized one message above all: “People with DS can learn,” provided they are given “the best state-of-the-art materials and programs” available.

“We now have young folks with DS going to college, and just lately a few have graduated!” she said. “Some adults can drive. Some are very good musicians or artists. Some are models. These are people who have had good early behavioral support and training, a strong education with targeted materials, and lots of belief in their ability to be successful.”

“At the same time, there are many people with DS who will not be able to attain these heights,” she added. “For some, the bar does not go as high, but with support, they can be successful at many things.”

Positive shifts are happening both nationally and globally. Donna said, “One of the best non-medical practices that has raised the bar on developmental outcomes, is

the educating of all children together. Prior to 1980 children with disabilities were educated in

separate rooms, often away from regular classrooms. Children learn so much from each other,

and thrive the best together.”

Furthermore, Donna noted, “Parents who have a new baby with DS are rarely met these days with sorrow from their friends.”

Donna described the gift of community of friends and parents around disabled children. Many of those connections are fostered directly through the Alaska Down Syndrome Network. As a non-profit, the Network sponsors recreational outings. “We set up and pay for activities such as gym rock climbing, swimming, and miniature golf. A highlight is a big Christmas party with Santa,” Donna said.

The Network also awards annual scholarships to cover costs for medical needs, fitness, and clothing items. If new or expecting families reach out to the Network, "We have literature, and we do home visits to hand out new-parent gift bags when a baby is born.” The organization also maintains an active presence with a booth at community symposiums and public trainings.

For families in rural Alaska, feeling connected to the broader community can be a challenge. “We try to stay current on what is happening nationally, sharing information with families about educational programs available via Zoom,” Donna explained. “A number of our activities can be done at home, so they include those outside major towns. And families in smaller communities are always eligible for our scholarships.”

On a local level, Kayla Goodwin serves as the K-12 Special Education teacher at Kenny Lake School. “Families put a lot of trust in educators, and it is a privilege to get to advocate, love, and care for the students on a daily basis,” Kayla said. “I cherish the relationships I have been able to build over the years.”

One of the greatest challenges in special education is managing behavior when students struggle to communicate their needs or frustrations. The goal is to equip students with healthy coping mechanisms and communication tools for both school and home environments.

“Students with communication limitations work with speech pathologists contracted through the school district,” Kayla explained. “The speech pathologists work on receptive language—understanding what is spoken to them—and expressive language, which is expressing needs or thoughts. We model and practice skills like asking for a snack or stating what they need.”

Kayla credits her team at Kenny Lake School with fostering a collaborative environment. “When a student masters something we’ve been working on—sometimes for a year or more—the joy, pride, and sense of accomplishment bring a victory to those of us who work with them, too. The students grow throughout their time in school, but they are also teaching me and allowing me to grow.”

Living in the Copper River Valley brings unique rewards, but geographical isolation also presents hurdles. “Some of the toughest challenges include bridging gaps with limited resources,” Kayla noted. “We are blessed to live in a beautiful area, but there are fewer community resources for families with disabilities compared to larger towns.”

Community members interested in supporting local students can explore volunteer opportunities at the school, or look for ways to promote inclusion through existing venues like churches, sports programs, workplaces, and local clubs. For those with qualified experience, open paraprofessional positions at the school are also available to apply for.