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| Orion lovingly hugs his mom's hand. (Image description: A screenshot of National Association of the Deaf's Instagram account, @NAD1880, displaying a photo of a 4 year old white-haired, caucasian DeafBlind boy hugging his mom's hand with his head. Only his head, left hand which is holding a wooden toy, and his mom's hands are visible.) |
If you’ve met one child who is DeafBlind, you’ve met just one DeafBlind child. The number of DeafBlind kids in the United States is so small, since it’s a low-incidence disability. In 2014, there were 9,133 children from birth to 21 identified as DeafBlind, https://nationaldb.org/childcount. My son Orion is one of the 1,709 DeafBlind children from birth to 5 years old counted in 2014. DeafBlind children are also diverse due to additional disabilities, family background, communication needs and growth, levels of deafness, how they use their vision, if any, and how they move through their environment. Many were born DeafBlind and many became DeafBlind before or after language acquisition and concept development, or later in their K-12 educational years. Most importantly, DeafBlind kids have their own personalities and favorite things to do! Check out my blog, “A Mom’s Musings”, at http://hexwit.blogspot.com for stories and videos of nearly 6 year old Orion, our family, and links to online resources and information that I found extremely helpful. You can also find Orion and other inspiring children on social media with hashtag searches for #DeafBlindKids, #DeafBlind.
There are DeafBlind Projects serving each state, providing technical assistance in the classrooms and in family homes, workshops, training, networking with other families and resources. Find your state’s DeafBlind project as well as pretty much anything else “DeafBlind" by visiting the National Center on DeafBlindness’ (NCDB) website, https://nationaldb.org Finding my state’s DeafBlind project was one of the first things I did… before Orion was born! On my blog for new parents is a list of items, including early intervention, parent-to-parent connections, communication, playing, etc., to consider for families of DeafBlind children, http://hexwit.blogspot.com/p/for-fellow-parents_19.html
Many DeafBlind children benefit from #Interveners who are trained in intervention, communication and educational strategies for children with deafblindness. Interveners can be found in schools, community and home but they aren’t everywhere just yet. This is just one small part of where the Cogswell-Macy Act will make a difference in the lives of DeafBlind children, by properly identifying and counting DeafBlind children, recognizing and facilitating the growth of qualified personnel, whether they are interveners or teachers. Photo contributions of many families with DeafBlind children made it possible for me to put together a video in support of Title III, the DeafBlind part, of the Cogswell-Macy Act, https://www.youtube.com/watch?v=wVS3H9Z2FHM
The biggest concern is that the contents of the Cogswell-Macy Act needs to happen “yesterday”, our future generation of DeafBlind children are being born, celebrating their first or sixth birthdays soon with their parents advocating for what is appropriate for their precious family member.
With the leadership of the National Center on DeafBlindness, funded by the Office of Special Education Programs (OSEP), leaders, educators, interveners and family members of DeafBlind children and adults worked together on specialized module-creating teams over several years developing Open Hands, Open Access (OHOA) DeafBlind Intervener Modules. You can visit the website at http://moodle.nationaldb.org. The are currently 18 OHOA modules available with the final group of modules being field-tested right now and they will be revealed in the not-too-distant future.
You don’t need sight nor sound to inspire other people, that’s the gift our children are giving us and the world. We need to give back to our DeafBlind children by the way of appropriate and meaningful education- we need to pass the Cogswell-Macy Act which has been introduced in the House as #HR3535 but not yet at all in the Senate. To pass an act of Congress is no small feat!
In the midst of advocating you still can make a difference by supporting the growth of interveners and Teachers of DeafBlind (TDB). Officially, TDBs are still very new that, at least in Texas where my family lives, there isn’t state certification offered yet like there are for Deaf education, blind and special education, and so on. However, the passion for teaching DeafBlind children have been around for years! Yes, to families there doesn’t seem like there are enough of them. We can help meet this need by the way of scholarships, planning on training, convincing our local college or university to offer certificates or degrees in deafblindness as interveners or teachers! Or even start working in this rewarding field ourselves!
I want to thank each single person, wherever on this planet they are, who stumbled into or sought out the field of educating DeafBlind infants, children and youth. Thank You from the depths of my heart!
