Every Moment Counts

(This reflection was originally published on The Center for Family Involvement Blog on March 6, 2018.)

When my daughter was diagnosed with a moderate to severe bilateral hearing loss at age 2, we did a lot of research about hearing aids and genetic testing. We learned the difference between an IFSP, an IEP and a 504 plan. We pursued speech and auditory therapy. Later we requested an FM system for her to use in school. It never occurred to us that there were other things, just as important as amplification options, communication choices and educational advocacy, that we had overlooked: Like improving fire safety equipment and practices in our home.

It wasn’t until she was 11 years old and in middle school that something within me started to question the placement of our smoke alarms. I wondered whether or not she would hear them if they ever went off. Perhaps it was the firefighter who showed up at our door when I called 911 after smelling something suspicious near our laundry room that prompted me to start thinking more seriously about the subject.

I don’t recall a specific event that led me to contact the National Fire Protection Association seeking information about how to protect my child from fire related injury or death. But, that one call quickly led to another.  Soon, with support from Virginia Hands & Voices, the National Fire Protection Association, the Virginia Fire Marshal’s Office and the Virginia Fire and Life Safety Coalition, I found myself spearheading an effort never before seen in my state. Together, parents and professionals collaborated to establish “Every Second Counts for Everyone,” a fire safety program specifically designed for deaf and hard of hearing people and their families.

In November 2017, more than 100 families joined two Webinars to learn more about this important subject. More than 20 specialized smoke alarms were distributed free of charge to members of the deaf and hard of hearing community. In a separate Webinar, fire safety personnel from around the Commonwealth learned ways they could improve the services and support they provide to those with hearing loss.

In an unexpected twist, on February 24, 2018, I was presented with the Governor of Virginia’s Fire Service Award for Civilian Excellence in Fire Service Support for “exemplifying an outstanding dedication to helping protect the citizens of Virginia against the devastating effects of fire.”

While this unforeseen journey began with a simple, but vitally important concern for my hard of hearing child, I am grateful to have led a team that created a program that has benefitted families and fire service personnel across Virginia. Today, the National Fire Protection Association is able to offer the “Every Second Counts for Everyone” workshop to virtually any state interested in launching it within their community.

Today, families across Virginia are establishing more effective safety practices at home. We are making major changes to ensure that everyone, including deaf and hard of hearing children, will be able to successfully escape to safety should the need ever arise.

For fire safety information for families of children or adults with hearing loss, visit the National Fire Protection Association at: https://www.nfpa.org/Public-Education/Fire-causes-and-risks/Specific-groups-at-risk/People-with-disabilities/Educational-materials/People-who-are-deaf-or-hard-of-hearing