[blindkid] O & M evaluation, FVA

[Leah]

Marie,

This is all just opinion from a mom of a just-turned 4-year-old.

If my child could walk and had the vision you listed, I would actually  
get a long white cane before even requesting the O&M eval. I would  
request the eval, and request services. But, I would be prepared in  
case the O&M instructor felt that my child might not need a cane, or  
should only have it during lessons, etc. If that happened, I would buy  
Joe Cutter's new book and read it and get together with a blind friend  
and watch how they used their cane, and I would give my child the cane  
for use all the time. But that's just me. And my child is currently  
nonambulatory.

You said it appears that he may be having trouble with balance  
outside. Is there any indication with his diagnosis that kids can have  
any sort of inner or middle ear malformation? A balance problem is  
definitely something to watch out for and get help with. Besides that,  
though, maybe he has his hands up to protect himself or to prepare for  
falling?

I have a balance problem, and I am sighted. I can't balance in open  
spaces. The way it looks when I go out is: I try to sit/walk where I  
am very close to a wall all the time, or else holding someone's hand.  
I don't know if it is exactly echolocation, but I can balance by  
feeling the sounds bouncing off close objects (and by vision). I don't  
put my arms up in the air, but then kids might do that more than  
adults for balance fear. But, if I am playing a game outside with my  
daughter where I have to walk around with my eyes closed, then I  
instinctively put my hands up in the air.  It's funny, when we went on  
a blindfolded cane walk at the TX state convention, I thought I was  
going to want to put my hands up in the air, but with the cane in my  
hand I felt a lot safer and like I could relax my arms.

The differences you stated between indoors and outdoors could provide  
some clues for you over time. The cane is such a simple tool, and  
there are so many cane users, that I would just try it and continue to  
evaluate for a balance problem over time. There can be solutions if  
one is found.

<<Jack has fine motor issues which may make holding a cane difficult.  
His
fingers don?t bend. His hands are small.>>

I am guessing you could totally adapt. Get the lightest weight cane,  
and get help to make a handhold that works for Jack's hand. If some  
educational professional feels that the hand issues are something they  
don't know how to deal with with cane use, you can be the expert on  
Jack and try to create something. It would be so nice if the  
professionals were always ready for our complex kids, but in my  
experience, often they're not, and mom has to step in with that  
special motivation and expertise to find a practical answer.

<<Jack navigates his current preschool environment just fine except  
that he
needs physical assistance descending stairs and curbs. He needs verbal  
cues
for going up curbs and surface changes. >>

This is where the cane helps. He won't have to hold it all the time;  
he will soon find when he is not needing it to set it somewhere where  
he knows where it is.

Going to state or national NFB convention is the best place to just  
watch and absorb all the different people using their canes. I learned  
so much at our state convention.

<< Since then, I asked for another
FVA but was told that they are done only every three years or unless  
there
is a significant change. >>

There was a significant change because you got accurate data on his  
vision for the very first time, and it was very different from the  
information you had before. I would request one and I would ask for an  
experienced, mentor TVI to do it together with your TVI. One reason  
for this is the comment that you made about the TVI stating that he  
would be a visual learner when the information at the time indicated  
he was legally blind. I would hope for more information than just a  
statement like that. John has had one yearly, even though it is only  
required every three years, and he has had a mentor TVI present each  
time.

Leah