Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 , Dylan was almost 7 before we moved beyond " let's just simplify the environment " to actually intervening as if he had CVI. After we had Dr. Roman come and do his CVI evaluation, he has made more progress this year than the last three combined. He is so much more engaged with people and things, attends to people's hands more when they are signing, has progressed from tactile cues to picture cues etc. Basically now he again acts as if he is deafblind rather than deafblind AND autistic. Perhaps he would have done this anyhow, but I doubt it. I do think figuring out where he was at on each of the CVI characteristics and then building from there has made a big difference. Now that has that diagnosis, do you have people who understand how to figure out where she is at and what to do about it? Interventions for low vision and interventions for CVI are not the same, so don't hesitate to ask people what they know. You are welcome to e-mail me off list or call me if you have questions. Kim > erika has bilateral colobomas, nystagmus, and last year had the lens remvoed > in left eye due to angle closure glaucoma, despite al this we always felt she > used her vision pretty well to compnesate for her other defeceits. > todya i find out (8 years old) tha b/c of the plce of her colobomas she has > cortical blindness and cannot see things directly in front of her. this is so > frustrting why did it take this long to finally be explained this? what does > this mean? she also is deaf, recently got a BAHA implant so now the > communicaiton piece gets more frustrating. i understand the best school would > be > perkins, but i would never send erika away to school (we live in New york) and > we > cannot move my husband is a cop here. > the good thing is that we are now workin gwith the New York state Tech > project for deaf blind children and they seem to have some good ideas, i just > hope > its nto to late. > thanx for listening > cathie, erikas mom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 thanx for the info, who is dr. roman? and where doyou rach him? we are working with a deafblind educator and are getting evaluated, hopefully this summer by dr. Harvy Mar who is a deafblind specialist who has worked with other CHARGER's. cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2004 Report Share Posted May 21, 2004 Cathie, I agree with Kim's response and perhaps a consult with Dr. Roman might a great way to start. pam > ---------- > From: NPTQueenie@... > Reply To: CHARGE > Sent: Thursday, May 20, 2004 10:45 PM > To: CHARGE > Subject: cortical blindness > > erika has bilateral colobomas, nystagmus, and last year had the lens remvoed > in left eye due to angle closure glaucoma, despite al this we always felt she > used her vision pretty well to compnesate for her other defeceits. > todya i find out (8 years old) tha b/c of the plce of her colobomas she has > cortical blindness and cannot see things directly in front of her. this is so > frustrting why did it take this long to finally be explained this? what does > this mean? she also is deaf, recently got a BAHA implant so now the > communicaiton piece gets more frustrating. i understand the best school would be > perkins, but i would never send erika away to school (we live in New york) and we > cannot move my husband is a cop here. > the good thing is that we are now workin gwith the New York state Tech > project for deaf blind children and they seem to have some good ideas, i just hope > its nto to late. > thanx for listening > cathie, erikas mom > > > Quote Link to comment Share on other sites More sharing options...
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