Parents Discuss Their Experience (CC)

[ silence ] >> It is so important to realize that there is a huge continuum of deaf-blindness. We hear a lot about the spectrum in autism, well deaf-blindness also has a huge spectrum and every child is so different. As a parent, I know when my child was first diagnosed with Usher Syndrome, Type 2, I wanted to find another student just like him. As a student with a dual sensory impairment both impact his learning and his access to information and he's now 16, he was diagnosed around the age of three and I have yet to find someone just like Hunter and it is important that intervention be served to all students with deaf-blindness. There needs to be that individual intervention that intervener will work individually with that student and every student will be different but it is very important and the support is so greatly needed. >> My name is Caroline Daly and I'm the parent of nine year old Lauren Daly who is deaf-blind from prematurity. I gave birth to Lauren and her twin sister Elizabeth and 23 weeks and all of her subsequent medical issues have been due to the premature birth. >> She was born at 23 weeks, weighing a little over 12 ounces, and so it was a long time before we actually knew she was blind and we knew that, which is funny, we were trying to save the sight in one of her eyes and we knew that she had severe retinopathy prematurity, but the gravity of what that meant, we had no idea for a long, quite a while, and so, but we did everything that we were told to do but we really didn't completely understand it, is what I would say. For a long time Gabby was trached, ventilated, the whole nine yard, anything that you can expect of what a 12 ounce baby would go through at that time. She has cochlear implants, we got the first one when she was three, that's when we found out she was profoundly deaf, and then we got the second one at, when she was eight. And so, she voices as well as signs, but she primarily, for education, she has her, I would say the breadth of her, her language is in ASL and so, but she can voice most of the words that she can sign. >> From pretty early on, if he can't hear something or see something, he will tell you. I can't see that, or I can't hear that. I think it's the things that he doesn't realize he's missing that was the problem. When people meet Jessy, one of the first things they say is he doesn't look deaf-blind. I don't know what that means [ laughter ] no he doesn't look deaf-blind, and, or they'll say, but he does so well, and he does, but it's because of, of all the technology and the effort that he puts into just everyday life. >> The importance of vestibular needs. When I learned about it later, was that he had that earlier on and I just didn't realize it and I remember it specifically with this trip for Thanksgiving. We took the week off and took the whole family out to a lake house and hung out with extended family and I felt like the entire week, all I did was roll around on the ground because my son just would sit on my lap and pull my shoulders so that I would roll and roll and roll and roll and then I'd stop and then he'd pull me the other way and we just kept rolling and rolling and rolling and what I realized later when Christopher was in elementary school and they were concerned that he was misbehaving in the classroom but they weren't giving him PE, was he needed physical education, so we teamed up with this other action based lab which was all about coordinating the vestibular and physical needs with the needs of the body for mental development and it was then that I realized, oh my goodness, he needed this all along. >> Hi, I'm Kimberly Lauger, I'm from Tuscan, Arizona and I'm a parent of a 16 year old son with Charge Syndrome and I'm a consultant with the Arizona Deaf Blind Project and part of their intervener training team. So with Charge Syndrome, of course we have the vision impairment and hearing impairment, but then we get into, what about smell, what about balance with the semi-circular canals, what about body awareness when all of those other sensory systems are impacted? So one of the most important things for us has been to figure out how to address the sensory integration of all of the information coming in and we have found that the more organized the information is coming in through those impacted sensory channels, the more organized the information is coming out.