[blindkid] Cane Travel for 4 year Old

[Carol Castellano]

Dear Lesley,

My heart goes out to you for feeling so sad about your daughter 
losing some vision.  I know a lot of parents struggle with the 
thought of talking to their child about blindness.  But I also know 
that most of the time, the parents' fear is much worse than the 
reality.  You said it right in your message--that you are probably 
having a harder time with it than your daughter.

One thought for an answer to the "why don't my eyes work" question is 
simply to say, "I don't know.  Sometimes parts of our bodies just 
don't work so well.  But it's not a problem because we can still do 
things in other ways."  Then you can talk to her on her level about 
how blind people get various jobs done.  (If you don't know, I'm sure 
you will ask and soon find out!)  It isn't so much that she'll need 
to find other things that she's good at; it's that she'll learn ways 
to do virtually ALL things in a different way.

I know that you are also sad thinking that Kristy will miss out on 
things because she won't be able to see them.  There are SO MANY ways 
to appreciate and enjoy life--eyesight is only one of them.  I have 
often told this story, so forgive me if you have already read it, but...

My daughter Serena and I are both beach bums.  We love the feeling of 
lying in the warm sand, the smell of the salt air, the sound of the 
crashing waves, the wind in our faces, the feeling of the cold 
Atlantic water surrounding us.  Yes, I also see the ocean and truly 
love looking at it.  But I am completely convinced that Serena does 
not enjoy the beach any less than I just because I have one more way 
in which to experience it.  She is as in love with it as I am.

So don't worry about her missing out on things.  Just provide her 
with a rich menu of sensory experiences.  She will learn about 
everything and enjoy life to the fullest, too.

Best,
Carol

Carol Castellano, President
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nfb.org/nopbc

At 08:11 AM 12/18/2009, you wrote:
>Richard,
>  I applaud you on what you did for your child & it worked for you!I dont
>know much about your child but from what you just wrote it does not sound
>like you had to deal with sever behavioral issues?- (maybe you did but from
>what I read it didnt sound like that.) I wish that all kids caught on so
>easy without problems. Kristy has Bardet-Biedl syndrome & with that came
>sever issues with her behavior. There has been times that her cane was not
>taken away but a privilege of hers, something that she may have earned &
>that meant allot to her at the time. Yes I still use the reward system
>also. There has also been times where she used it as a weapon because she
>was mad about something & has hit other people with it or things in public.
>She can be set off by the littlest things & OMG sometimes you are better off
>just packing up & going home! I can say that getting hit in the leg full
>force really hurts! Most people do not understand issues that kids with this
>syndrome have & I was not saying that every parent should take a cane away
>from every child child just because. I dont know every detail of what is
>wrong with any of these kids on this list & I was stating different things I
>had to do for my child, maybe to give someone else ideas? What works for one
>parent may not work for another- everyone is different. I am not mean to
>her- but I do what I need to do to protect her & others around her when
>a situation calls for it. Plus its very important to me to teach her
>respect for others & others things & what is acceptable behavior not only in
>public but all the time. At the time a few of the teachers at the Minnesota
>State Academy for the Blind in Faribault suggested that I take it away. Yes
>they have had to do this with other kids there too.  It was not for a
>extended time frame & it was for her & others safety- it was just until she
>calmed down & was ready to reason & start over. Her tantrums or issues-
>whatever someone may call it- lasted for hours & hours at times. Of course
>if there is a child that does not have these issues but still refuses to use
>the cane the right way then I suggested to take a privilege away. I am
>not upset what you wrote  :-)  I just felt I needed to clarify what I meant.
>I am not a "mean" mom- LOL even if she thought I was at the time-LOL Just
>like you & probably allot of others on this list we all did things
>differently & by no means where any of us mean to our kids. It would be nice
>if they came with instructions thou.. LOL LOL.  Oh also Kristy is not
>completely blind-right now she has "some" (but not much) central vision. At
>the time we had to do this she had better vision & was able to see ok but
>would run into things if it was out of her field of vision. Now she is
>legally blind & its worse for her to see much & she relies on her cane more
>now then when I had these issues with her. If at the time she was completely
>blind I know things would have been done differently.
>Not to change the subject but I was wondering if anyone had a time with
>their child where they realized that they are going blind & that they know
>you can see but they cant?  Kristy has been asking me why her eyes dont work
>like mine do & why she is going blind. It broke my heart- I cried- & she
>cries sometimes. Of course I tell her thats just the way she was born & that
>just because she can not see very well there are other things that she can
>do that she is good at.  I try to stay positive about it -its hard. She is
>the type of kid that only opens up to me & wont talk about things with her
>teachers or other people. Right now the last year I noticed she lost so much
>of her vision that she uses her hands to feel for things or puts things up
>to her mouth to figure out what it is. We string beads a lot & she will put
>the bead up to her lips to find the hole & turn it around & around until she
>finds it & she marks it with her finger so she knows where to put the
>string. She has about 30 pet shop animals in a bag that she uses as bath
>toys & she can identify all of them just by touch. Its great that she is
>learning these skills & that she can modify everyday things so she can do
>them! But its so hard to sit here & see this & I cant do anything to bring
>her sight back. I tried to search out other families with this same syndrome
>locally but so far, nothing. As a parent you always try to bring out the
>positive & to show them that no matter how they are- with exception of
>course- that they can do anything to the best of their ability. I do think
>that I have a harder time with her vision loss then she does. Maybe its
>because she does not know any different & this is normal to her. Maybe its
>because I am the one with vision I know everything that she will miss out on
>in life. Either way it might be at the time, it makes me sad & I have a hard
>time dealing with it & it breaks my heart.
>Lesley
>
>On Thu, Dec 17, 2009 at 10:03 PM, Richard Holloway <rholloway at gopbc.org>wrote:
>
> > I would differ with the suggestions of taking away a blind child's cane
> > ever unless you are stopping outrageous flailing and smashing and even in
> > that case I would try not to put it in the context of "I'm taking away your
> > cane for bad behavior" and I'd return it as quickly as reasonably possible.
> > Having a cane is not a "reward" for good behavior anymore than "allowing" a
> > non-walking child to have wheelchair in which to sit and travel. I don't
> > think anyone who suggested taking away a cane intends it to come 
> across to a
> > child that way to a child, but having a cane is, IMHO, a right and our kids
> > need to understand that from very early on. I have heard too many tales of
> > schools taking kids canes away for misbehaving and I find that notion
> > entirely unacceptable.
> >
> > I don't mean to step on other's toes but I feel quite strongly about this--
> > I would pity the school employee who first tries such a thing with my child
> > for example. My reaction would be rather pronounced and unpleasant. I would
> > much prefer rewarding proper cane use with something my child likes or
> > taking away something for misuse other than the cane itself.
> >
> > NFB style canes have much less mass at the tip of the cane than many other
> > styles so one nice thing is that there is less damage to be done from at
> > least fairly moderate cane misuse-- possibly another reason to look at the
> > NFB canes. I also agree that the greatly increased vibro-tactile feedback
> > from an NFB cane may automatically reduce some of the banging 
> about to begin
> > with.
> >
> > We have been through cane battles with several O&M people and simply told
> > them that we want Kendra to use this stye of cane. If they want to discuss
> > alternatives, that's fine-- we'll listen but WE decide. This is 
> ultimately a
> > parental decision for children and a personal one for adult cane travelers.
> > We did even use a different cane for a short time because Kendra wanted to
> > use it, but the reason was most likely that it was more like her O&M
> > teacher's teaching cane. We let her try it because she refused to use the
> > cane we wanted and we figured it better to use SOME cane than to refuse at
> > all,  then we shifted away from it as soon as we could get her 
> using her NFB
> > cane again with minimal resistance. (We later got the instructor to change
> > to an NFB cane herself, BTW...)
> >
> > We started our cane use around 18 months and insisted on it being used as
> > opposed to the recommended "pre-cane devices" (big clunky things made of
> > PVC). When Kendra was quite small she would drag her cane behind her but we
> > figured that was better than nothing-- she was learning that her cane went
> > with her when she was traveling, always. After a while we got it 
> in front of
> > her most of the time but it tended to "float". Sometimes we'd say "tap-tap"
> > to her and she'd start to tap it in front of her. Sometimes we'd ask her
> > what her cane was telling her and remind her that it would not tell her
> > anything if it wasn't touching or tapping the ground.
> >
> > One thing that I think was pretty effective though she may have been
> > slightly older than 4 (but not a lot older) was to intentionally walk her
> > into things, but carefully. I was not being mean, I promise you-- 
> if we were
> > heading for our front steps for example, I'd make certain not to break my
> > pace as I headed towards the stairs (that would let her know we were close
> > to the stairs) and if her cane was in the air, she'd trip and go forward.
> > Here's the safety precaution-- I'd be ready to catch her before 
> she would do
> > a face-plant. She quickly improved her cane position! I'll still 
> do the same
> > thing now and then with a curb or similar low item that would be easy to
> > find with a cane so long as it is not "floating". She makes that mistake a
> > lot less now and so far she has never actually fallen. Also, I did not
> > always do this-- just now and then, to keep her on her toes... I think it
> > was helpful.
> >
> > Now if there were cars nearby or friends watching her, I would not do this
> > intentionally-- this is intended to teach her what can happen with minimal
> > danger, not to embarrass her and certainly not to harm her. The fact of the
> > matter is that if we don't let our kids experience little trips and bumps,
> > when it is time for them to be walking alone with nobody there to catch
> > them, then they really will get hurt.
> >
> > In a similar way, we used to guard things that she might walk into with a
> > really sharp corner but let her bump into things less hazardous as she'd
> > learn her way around places. Now we generally don't need to worry 
> about that
> > because she knows how to move about and explore with reasonable safety.
> >
> > Most recently (but only starting around age 6) Kendra became more aware of
> > an adult friend and fellow cane traveler's cane sounds. She basically tuned
> > into this on her own and started asking about it, so she learned and really
> > began to understand that other blind people including blind 
> adults use canes
> > and they tap them when they walk. Now we can ask her if she's 
> using her cane
> > like our friend and she immediately begins to tap and use her cane in step
> > if she has stopped doing so...
> >
> > I know I have digressed from the original question a bit, but I wanted to
> > underscore there is progression and in our case it seemed to follow from
> > reward (often just praise) for first using the cane at all and 
> then only for
> > proper use, then progressed to having consequences tripping and crashing
> > into things when she didn't use it properly, and then to feeling like she
> > was acting like a respected role model by using a cane like he does. That's
> > really not so different from the way kids learn about a lot of things I
> > suppose...
> >
> > Richard
> >
> >
> >
> >
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