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• need shooling advice
• Posted: 2010-08-19 13:26:08 By Narayani V
• Hello,
  My son 4.5 years has XLRS and undergone surgery for detachment. His current vision is 20/90 in the left eye and 20/200 in the right eye.
  He will be mainstreamed in a public school here in the state of Washington.
  what kind of facilities should I look for in the school. Should the school have overhead projectors so that he can see everything in the computer?
  any advice from parents of similar age and details on what they provide for their kids to cope up with the rest of class will be hihgly useful for me. should I choose a small school with dedicated teachers and a community feeling or a large school with more high-tech devices?
  
  thank you all,
  Mom
  

• schooling advice
• Posted: 2010-09-09 12:09:14 By Sarah E
• My 5-year-old just started kindergarten and I am having the same questions as you. He also has had retinal detachment in the right eye with 20/200 vision and 20/80 in his left eye. He is becoming more aware of his vision limitations and is starting to ask a lot of questions and lamenting about not seeing well.
  
  I'm learning a little as I go along. Our state (Utah) has a state-funded school for the blind. This school works directly with the local school district to provide needed resources and education. The child can stay in the regular school setting but just get extra help. Maybe your state has a similar program. Maybe you wouldn't need to find a school that already has the projectors, etc. you would just work with the program to get these resources into your child's school.
  
  Again, I'm still learning and would love to hear from other parents about public school help for visually impaired kids.

• Is your son using Dorzolamide?
• Posted: 2010-09-13 17:06:39 By Michael P
• Hi Mom,
  The 20/90 vision, while not good, should give your son enough vision to do well and not require special vision equipment. To be honest, most of us do not like to use special equipment, we just do not. It will help that you/he has contact with the special ed department and that is most likely the way his case will be handled. I believe that performing in the regular classes with his peers is the best way for him to develop. My doctor’s advice to my Mom when I was a child was to not treat me as if I was disabled. Believe me, the more you make him perform without special equipment or services the better he will develop life skilla. Your goal is to make him a productive member of society, not dependent upon society. And, with his vision he can do this and do it well.
  With all that said, I would take him to a low vision specialist to evaluate simple technologies, like hand magnifiers, bifocals and possibly telescopes. With 20/90 he will most likely not be driving because his visual field will to too narrow, but who knows. Keep the computer screen a little large and buy him books with larger print; although, he does not need the LARGE PRINT BOOKS.
  Because he has already had a detachment he will most likely need to avoid very physical sports, but while he is young this is not a problem. I worry that you will have to keep this little man from being too active and this is not something I generally recommend. However, given the previous detachment and at such an early age you need to steer him away from sports participation and into watching.
  With all that said, your biggest job is to get him ready for life, let him pursue his dreams and don’t hold him back. He needs to work out how he is going to cope with his vision. Treat him special but do not treat him like he is disabled, he is not.
  Finally, I hope that he is trialing our using Dorzolamide/Trusopt drops? At his your age there is a chance that the vision in his 20/90 eye may improve. Good luck and all the best.
  
  MikeP
  

• School Advice
• Posted: 2010-09-26 22:04:13 By Vickie C
• My son is 5 with XLRS and just started kindergarten. He has 20/60 vision in his right eye and no usable vision or light perception in his left. Our school system works directly with us and my son's doctor to determine any special classroom or school needs. We live in Northern Virginia. At this time my son is not using any special devices but he does sit in the front of the room and with the teacher to his right. We have him the regular public school system because we felt it was important for him to attend school with the many children in our neighborhood.
  
  I'm not sure if this would be helpful to you but I recently read a book called "Children with Visual Impairments A Parents' Guide" and found it helpful. I skipped through parts that were not pertinent to my situation but it has a lot of helpful information on special education, resources, building independence and self-esteem, etc. I was able to borrow it from our local library but it is also available from many websites online.
  
  MikeP's advice on getting these children ready for the future and not holding them back is great. My doctor has not mentioned the drops but I will have to ask at our next appointment.
  
  Vickie C

• Posted: 2011-05-24 04:28:06 By Kim L
• hello,
  My son is now 10 yrs old. We have been dealing with his diagnosis of XLRS for 4 yrs now. His vision on a good day is 20/100. While I have been blessed with no hemmorhages for almost 2 yrs now, our school systems have always worked great for him. While we lived in florida, his dr actually called the school on his own and gave them tons of info on what to expect and things to take into consideration. That was nice when he lost his vision one day at school due to a VH. They used to make his vocabulary lists special for him with a larger font, keep him in front and not to the side that forced him to use his left periferal vision since he really doesnt have any, and they used to give him their note cards they were holding up to class so he could follow along on his own with larger card in front of him. He no longer needs the specialized attention, but you just need to talk to your childs teacher and find where they will have difficulty and ways to help. Now that we moved back to Nebraska, I simply just had a talk with his teacher, and this year only special help he needs was his desk seating. My son actually has a much harder time when teachers use projection screens so they always help him with that. I agree with Mike, my son did not like using the specialized equipment. He would use his magnified glass with light when at home, but refused to at school. The other aids like the pocket telescopes were just too hard for a 7yr old to understand how to focus, so we held off. Low vision doctors can work great with your child to find any aids that may help. I also agree with Mike to trial some of the drops...My son finally did trial Trusopt, unfortunately they were unable to help him, but worth a try. Good luck to you all.
  
  Kim