[blindkid] Cane Travel for 4 year Old

Fri Dec 18 23:47:59 UTC 2009

Thank you for the kind words. I thought of that as well.  I think that she
has a hard time adjusting to her vision loss because she cries & is upset
that she cant see like she used to. I dont know if its harder to not see at
all  from the start, or to be able to see then loose your vision & to miss
out on things you use to see, or is that a blessing that you once seen
things & you can remember what they looked like? I used to be scared that
she would forget what I looked like until one day  when she was upset about
that, I told her that she will always know what I look like because I am in
her heart & that is what matters the most.
Lesley

On Fri, Dec 18, 2009 at 11:42 AM, Carol Castellano <
blindchildren at verizon.net> wrote:

> 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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