[blindkid] talking to a child about blindness

Richard Holloway rholloway at gopbc.org
Thu Mar 11 17:10:06 UTC 2010


One might think it impossible with the length of my last reply but I  
left something out; something really important that we certainly  
didn't leave out of discussions with our daughter: It is okay to be  
blind.

Yes, that's just "how it is", but it is also okay. We can "see" with  
our fingers instead of our eyes. We can read braille or print, (large  
or small). We can listen to words when we're not able or wanting to  
read them for whatever reason. We can travel in a wheelchair or with a  
walker. We can use a hearing aid or we can have no hearing at all. All  
of it is okay.

Whenever our daughter seems down or frustrated that her eyes are  
different than most of her friends, in her case, very often because  
she's frustrated when one of her "acrylic eyes" has just fallen out as  
they tend to do now and then-- When an eye has to get put back in,
we have at lest a mini version of that same conversation. "Organic  
eyes" stay in but acrylic eyes can fall out. When they do, we wash  
them and put them back in and that's okay, just like... and I then  
pick the most appropriate thing that comes to mind at that moment.

I expect I'll be repeating things like that to her for many years to  
come, but yes, that too is okay; it's just the way things are, and I  
say that with a subtle smile because I really do believe it.

Richard




On Mar 11, 2010, at 10:18 AM, Richard Holloway wrote:

> 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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