[blindkid] talking to a child about blindness

[Richard Holloway]

Though she has always been in mainstream classrooms, for the last  
several years, our daughter has gone to school with a good number of  
other special needs children. Being completely blind, she is probably  
less aware than most kids of signals that many other children might  
get-- signals telling her that other kids are indeed physically  
unique, and of corse the school is legally forbidden from  
acknowledging which kids have IEP's. They talk about differences more  
in generality, as opposed to saying. "Look at little Susie-- she can't  
walk..."

We often find it ironic, and borderline humorous that the schools go  
out of their way to generally avoid discussing Kendra's blindness  
around others as if nobody might notice she's blind, but we understand  
the concept and underlying intent. And the fact of the matter is they  
do discuss her situation a lot in certain ways because they have made  
other kids very aware of what is or is not appropriate due to her  
situation and many of the sighted kids have explored and some are  
actually learning braille, for example,  just because they like to.  
Personally, my philosophy is not to ignore that there are differences,  
but to acknowledge them; embrace them in an appropriate way as they  
come up for whatever reason.

What our daughter does notice is more about what is in her classroom  
where she's more interactive with things and people, and most anyplace  
she is, she'll notice things that make sounds. She would for example  
notice other kids canes clicking down the hall, except she has almost  
never gone to school with other cane traveling blind students. She  
might hear a walker being used or a motorized wheelchair-- things like  
that. There is a point here, BTW....

We have explained to our daughter that some people can see with their  
eyes and some people can't, just like some people use a wheelchair to  
travel and some don't, or a walker, or a (conventional) cane-- like  
her grandfather. When we explained about the wheelchair to her mainly,  
was when there was a boy in her class who was in a wheelchair and she  
often ran across the chair in school. Some people can hear with their  
ears and some can't, and the list can continue. The bigger challenge  
that will follow is probably the inevitable "why" that you are likely  
to hear shortly after the discussion about the way things physically  
are.

Now folks, please don't bite by head off about what follows because I  
don't want to be misunderstood. Most of us are probably aware of the  
Sesame Street series. I suspect that many of us, like myself, grew up  
with that show. The actor who played "Mr. Hooper" died back in the  
early 80's and instead of hiring a new actor to replace him (as they  
had done for Gordon, for example back in the early 70's-- in fact they  
replaced him twice) the decided to deal with the concept that Mr.  
Hooper, the character, had actually died.

I am in no way comparing blindness to death. Please. please understand  
that! What Sesame Street did that I think ties in here is they bravely  
choose to deal with a very difficult concept in a direct way and  
without euphemisms. The didn't say he had passed away or gone to  
heaven or any of that. He had died. He was dead and when Big BIrd  
wanted to know when he was coming back, they explained that he would  
not be back.

I know of an blind adult in her 60's who explains to this day how as a  
child with no vision she never really had her vision loss explained to  
her and she assumed that vision was something you "grew into". She  
thought she'd be able to see when she was old enough and then she'd  
understand what all this talk was about. She was in fact, looking  
forward to growing into her vision... Nobody ever made it clear to her  
that some people could see and some could not and that she would have  
to learn to do things without vision while some people would not.

So coming back to the "why" portion of things-- On Sesame Street, the  
why of a difficult concept was explained as "just because". In that  
case, it tied back to some unusual thing that Big Bird was doing  
earlier in the show-- I think he had been standing or skating with his  
head down between his legs or something unusual and when asked why he  
was doing that, he said it was "just because".

When our daughter asks about why her eyes are different, or why  
anything hard to grasp is how it is, I tend to say "that's just the  
way it is".

For us though, I don't think this really came up until more around age  
five. I'm sure that varies from child to child and surely at some age  
you would want to go ahead and discuss it but I don't think there's a  
big rush at age 2 or 3. There may be medical reasons why some people  
have lost vision that may be appropriate to share at some point, but  
for a very young child the technical reasons "why" they are blind  
aren't going to matter or be understood, and as we all know that isn't  
what they're really trying to ask either. In our case, despite  
extensive attempts to save vision (surgeries, etc.) and various tests  
to try and determine the cause, we have no answer to share, so we can  
honestly say "I don't know why", but we focus more on the "that's just  
the way it is" concept.

I do think it is helpful for the child to have some frame of reference  
if possible-- if there are several friends or known people with  
blindness and some others they know or know of in wheelchairs or  
walkers, etc., Anything that is somewhat tangible and unique, if not  
directly related to vision loss, that is going to have a better chance  
of conveying what you are trying to relate, an again, I would not rush  
into a big explanation until it comes up. Vision loss is nothing to  
hide from the child, but it isn't really a focus either.

This is a bit off the wall, but I'll throw it out there because it  
helps me personally with all of this. What if there were another sense  
that existed but none of us had it. (Perhaps there is, right?) Let's  
call this sense "telepathy". I don't have it. I don't think anyone  
does, but maybe they do. Whether it is real or not, I definitely don't  
have it and I don't expect to gain it. It doesn't really matter to me  
how it might be useful to me if I had it-- I'm not going to get it, so  
I don't really want to spend a great deal of time focused on what I'd  
do differently if I had it. Now, if (as with vision in many cases)  
many friends had this so-called telepathy, and I became curious to  
learn more about it and started asking-- yes, in that case, explain as  
well as possible for a given age. Does that make sense? Buy you're  
still probably not going to have a great reason why I don't have it  
too, right?

That's probably more info than you were after, but that's where I am  
on the topic. Kendra is 7 now and this is a topic (blindness) that has  
been an ongoing discussion for a couple of years or so-- it comes just  
in bits and pieces, and there are reasons to try and explain vision to  
her more and more. This is a process... Kendra is forever frustrated  
that I cannot answer questions like "what color is this", or "what  
does this look like" while waving something at me and seated behind me  
in the car as I am driving. She wants to grasp how / why we can hear  
sounds from all directions but only see in one general direction. For  
people with some limited vision, I suspect this is far less confusing,  
but if you stop and think about it, vision is the only sense that is  
so specifically directional. Yes, sound and smell to work better in  
one direction but you can still hear and smell somewhat if you're  
facing the wrong direction.

One related topic that makes little sense to her so far is the notion  
of "clear" things like glass windows. You open one thing (say, a solid  
door) to look through a doorway but you can see THROUGH a window.  
Closed windows virtually stop smell and sound, but not light? Why is  
that? Again, that too is a process, and perhaps a subject for another  
thread sometime as I suspect I've more than exhausted this topic.

If you have any other specific questions about our experience with  
this though, feel free to contact me off the list.

Richard




On Mar 12, 2010, at 5:58 AM, julietnan wrote:

> Hi, I wondered if any of you could share with me the different ways  
> you have talked to your children about being blind. The ways to  
> explain it, or how to answer questions they might have. My daughter  
> is 2.5 and I want to talk with her about it in a normal sort of way.  
> I don't want to make her feel like there is something "wrong" with  
> her, don't want to use the "your eyes are broken", as from my mind,  
> that would be negative. I want to just be able to talk about it in a  
> gentle normal sort of way, any help would be appreciated. I just  
> don't want to say the wrong thing.
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