[blindkid] Which Direction Should I Go?

Pui pburmahln at yahoo.com
Tue Jan 20 16:51:58 UTC 2015


Adding to this, we have a 5 year old son with similar vision (and exhibits the same behaviors) with LCA, the most aggressive form of RP. His ophthalmologist who has been treating him since he was 4 months old for nystagmus had always told us his eyes were healthy. Ditto for an adult retinal specialist. It took a pediatric retinal specialist to notice subtle changes that distinguished his retinas as 'different' from healthy retinas. My advice would be to go to a pediatric retinal specialist.

Since preschool my son has been learning braille (in addition to print) and cane skills. The doctors and school district did not recommend these skills. I did the research and decided it was best for my son. Wouldn't it be wonderful to look back and exclaim those skills weren't necessary because your son's eyesight remained stable, rather than look back and wished some time had been spent learning those skills because his vision deteriorated? That is what I asked myself. Sure, those blindness related skills take time when everyone wants to treat and teach your child as fully sighted, but it's a small price to pay for independence. Go with your gut instincts. We know what's best for our children, not the professionals.

Best of luck,

Pui Burmahln


Sent from my iPad

> On Jan 20, 2015, at 8:05 AM, Jamie Allison via blindkid <blindkid at nfbnet.org> wrote:
> 
> I know you've been inundated with responses, so I'll try to keep my thoughts brief and hopefully it won't exactly repeat what others have said. I certainly agree that you should definitely seek out nonvisual skills and educational opportunities for your son. The eye doctors are very sensitive about blindness issues and to them it's almost as if they're a failure if they have to admit that a patient is blind. Many of them are also still educated to believe that blindness is a disadvantage and something to be avoided at all costs. Of course, they should be concerned with maximizing the health of their patients' eyes to the extent that they can, but some eye conditions just aren't completely fixable by nature. They have a very hard time accepting this and will recommend anything and everything other than using nonvisual skills. I don't think eye doctors should be making recommendations concerning a child's educational placement or what tools the child
> should be using other than prescribing glasses. Then it should be up to the patient as to how and when they use the glasses. 
> 
> Visual acuity is simply a measurement carried out in a very sterile environment. Your son is not the first person who has been told by the eye doctor not to be considered blind but nonetheless is exhibiting behaviors that prove this to be incorrect. Clearly your son has several eye conditions and a visual processing condition all working in concert to make it difficult for him to see. I can assure you that he would benefit from cane travel and Braille, even if he does continue to use what residual vision he has when it's useful for him. That's the beauty of having nonvisual skills.. your son will be able to decide which skill gets the job done fastest and easiest and won't struggle with using vision when it's not helping him, but will still be able to use it when he feels it helpful. I would also recommend getting some training under the shades. This will help him to focus in on his other senses and he'll learn when to pay attention to his eyes and when
> it's better not to. You will also find many allies in the NFB. There are no qualifications as far as visual acuity measurements. Anyone who has visual conditions, no matter if they have some residual vision, is accepted as a blind member. Sighted family members can also be associate members. You'll find quite a few who are dealing with the same circumstances as your family. 
> 
> Jamie Allison
> National Federation of the Blind - Cherokee Chapter President
> Lead Instructor, NFB BELL in SC
> 
> The National Federation of the Blind knows that blindness is not the characteristic that defines you or your future. Every day we raise the expectations of blind people, because low expectations create obstacles between blind people and our dreams. You can have the life you want; blindness is not what holds you back.
> 
> To make a donation to the National Federation of the Blind Imagination Fund campaign, please visit www.nfb.org/ImaginingOurFuture.
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