Guest Blogpost: June 27-July 3 is Deaf-Blind Awareness Week
Minnie Lambert • 06/17/2021
“But he’s not Deaf and Blind!!!” These were my first thoughts 10 years ago when I first had someone tell me that Andrew was DeafBlind. I later realized I had a LOT to learn about my child and this “condition” that he has that had been brought to light.
In 2003 Andrew was born with CHARGE syndrome. A condition that I would later find out is the leading cause of Congenital DeafBlindness. He was born with both vision AND hearing impairments. THAT is what Deafblindness means for him. He can not gain access to the world by depending solely on his eyes or his ears the way a person that is blind or deaf can. My son needs a mixture of every type of expressive and receptive language that we can think of. Something that I would learn from experts in the field of DeafBlindess as Total Communication.
DeafBlindess is a disability of a lack of ACCESS. ACCESS to the world and what is happening around me, incidental learning of what is going on and what might happen next. Many people who are deafblind have issues with their vision and hearing but Andrew, having CHARGE syndrome, also struggles with touch, smell, balance, awareness and taste. CHARGE syndrome causes multiple sensory impairments of differing degrees for all that have it.
Andrew struggled greatly his entire life at school. Finding service providers that appreciated and understood Andrew and his unique needs as an individual with DeafBlindness has made all of the difference in the world for him. He is now growing and thriving and is truly HAPPY!
Excerpted from Overview on Deaf-Blindness by Barbara Miles
“It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality deaf-blindness is a condition in which the combination of hearing and visual losses in children and youth cause “such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness" [34 CFR 300.8(c)(2)] or multiple disabilities. Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disability have the opportunity to reach their full potential.”