A less common form of deafblindness occurs when an individual is born without sight or hearing, and has to rely solely on his or her tactile experiences to learn and develop. This was the case for Clarisa Vollmar, born in Wisconsin in 2015. We spoke to her father, Justin, about raising a deafblind child in the United States and raising awareness of the condition.
“Like every other parent, we were shocked,” says Justin. “Then we cried but we immediately picked ourselves up and were determined to try to be the best parents for Clarisa.” Like their daughter, both Justin and his wife are deaf, as are their other three children. Justin and Rachel met at university and both have Waardenburg Syndrome.
Justin admits that raising a deafblind child has presented him with a whole new set of challenges, as he has had to “throw himself into the deafblind world”. To communicate with their daughter, Justin and Rachel use American Sign Language modified for tactile use, so for example, to sign “Daddy” they will tap on Clarisa’s forehead, or sign “milk” by squeezing her forearm. Whilst she has not quite grasped the concept of communicating like this just yet, Justin explains that she does respond to their signs, for example opening her mouth for a bottle.
Though there are government-funded deafblind projects through America, Justin says that some states’ projects are better than others. In the United States today, more and more people are beginning to learn about “Pro-Tactile”, a method of communication which relies upon touch.
Despite this, Justin fears that some people, particularly university students, are suffering from the social stigma associated with deafblindness. He is confident for his baby’s future however, and says that the pair has received an overwhelming response to Clarisa’s plight on social media. “Clarisa has won many hearts,” says Justin. “She is a very strong-willed child; she will communicate her dislikes, anger and wants.”
For all the difficulties of raising a deafblind child, Justin admits that he would not change a thing. “The best part about being Clarisa’s dad is that she’s a daddy’s girl!” he says. Clarisa is also blessed with three loving siblings, who equally love to communicate and play with her.
The next few years may be challenging for the Vollmars, but with increased education throughout America and the support of a loving family, Clarisa can look forward to a prosperous future.
This article was written for the spring issue of Open Hand magazine, the bi-monthly publication for national charity Deafblind UK.
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- Project URL:https://deafblind.org.uk/what-we-do/open-hand-magazine
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