[blindkid] Cane Travel for 4 year Old

Mon Dec 21 11:49:20 UTC 2009

Thank you & merry Christmas to you & your family.
Lesley

On Sun, Dec 20, 2009 at 11:25 AM, Susan Harper <
sueharper at firstchurchgriswold.org> wrote:

> In the end, only one thing matters.  You do the best you can with what you
> have.  You have good days and bad days with ups and downs.  In the end, we
> are all here to support you and only you know what's best for you and your
> child.  Your child is the lucky one to have been born with a Mom with so
> much Pluck!  It will pay off one day!
> Merry Christmas and Blessings,
> Sue H.
>
> On Sun, Dec 20, 2009 at 10:22 AM, LESLEY FISCHER <
> lesleyfischer at dishmail.net
> > wrote:
>
> > I thank you for the insight with all of this. I have went through all of
> > this & I tried all of this. I took her to countless specialist at Mayo
> > Clinic in Rochester & addressed this. As to find her triggers- it was
> over
> > stimulation, a certain smell, a touch she didnt like, to many people or
> > even
> > sounds & maybe that day it was to hot or windy. For years I battled with
> > her
> > issues & I never just took her cane away all the time or just because &
> yes
> > she has given it back after she calmed down & was ready to start again &
> > yes
> > she is still asked to pick things back up if she throws them. That even
> > goes
> > for slamming doors. She is told to open the door back up & shut it the
> > correct way & if she still slams it she re does it until she can do it
> > correctly. There was a time where I had to stand in her way & demand what
> I
> > wanted out of her & I refused to budge until I got what I asked. She is a
> > strong willed child- something that she gets from me. She is a lot better
> > then a few years ago & yes there are places that I do avoid taking her at
> > times & there are places that I take her back to even if she had an issue
> > at
> > one time. Its important to me to show her appropriate ways to act & that
> > goes farther then just in public places. She knows how to treat people
> with
> > respect- no name calling etc. She may be delayed but if she is not taught
> > how to act thats not going to help her be a public acceptable &
> productive
> > part of her community. I am not going to be around all her life & the way
> I
> > look at it is whatever I can do now will only help her in the future. I
> > know
> > what I may do with her another person will say I am wrong. They didnt
> have
> > to live the last 13 years with us & deal with everything we did. I never
> > had
> > the support of my family & in fact they were so far uninvolved I wouldnt
> > even call them family anymore. My dad & his wife where the only ones that
> > accepted Kristy- my mom died a day after my 9th birthday thats why she
> was
> > not involved. I do this & I did that & I listened to all the
> professionals
> > &
> > specialists & the last 4 years I started to hear how thats just how she
> is
> > going to be we cant help you anymore & when she is an adult she maybe one
> > of
> > those people who have to be placed in a home. I heard it all & the more I
> > heard it the more I refused to give up. Everyday is different & yes I do
> > have bad days & I get down & so does she. I always look for ideas how I
> > could do something better or there is another way that might work better.
> I
> > never look back & said how I should of did this or that & how I did that
> > wrong. Why? Because that does not help you today & you cant change the
> > past-
> > why let it get you down?  So no I do not feel like a bad person for
> taking
> > her cane away when it was not used correctly. Everyday of our lives have
> to
> > be modified as needed & I figured that since obesity is a factor with her
> > syndrome & she is already about 2 inches taller then I am & out weighs me
> > by
> > a good 50 + pounds there are things that have to be done different to
> keep
> > her issues under control.
> > Thanks for the great advise! Merry Christmas.
> > Lesley
> >
> > On Sun, Dec 20, 2009 at 5:03 AM, Merry-Noel Chamberlain <owinm at yahoo.com
> > >wrote:
> >
> > > Canes with children with ‘extra’ special needs
> > >
> > > I know that it is the first instinct to take something away from a
> child
> > > who is using that something as a weapon to harm others.  I have to
> agree
> > > that if the something is used as a weapon – that something needs to be
> > taken
> > > away.  However, if that something is also a tool – a method to
> accomplish
> > > independence - then we have to find the trigger.  As a Teacher of
> > Students
> > > with Visual Impairments AND an Orientation and Mobility instructor, I
> > have
> > > worked with several students of various abilities.  I have worked with
> > > students who will raise the tip of their cane all the way above their
> > heads,
> > > who toss their canes over a bus, who have grabbed their cane and other
> > > people’s canes and bit them in half, who will swing their canes around
> > their
> > > head like a helicopter blade hitting anything around them and NOT
> letting
> > go
> > > of the cane, who have used their cane to hit their teachers, parents,
> or
> > > just the closest post!  When those things have happened I
> > >  become the student and I have to learn from them.  I have to look at
> > each
> > > student individually try to figure out why (oh why) are they doing that
> > then
> > > I have to decide what is the best plan for them.  For the student who
> > would
> > > hold the tip of their cane over their head, I wondered if he got his
> head
> > > hit by tree branches because he was so very, very tall.  He was
> > non-verbal
> > > with additional needs and became my student at age 20..  As I walked
> with
> > > him I said over and over again, “Please keep your tip down.”  When he
> did
> > > keep it down, I told him, “I like how you have your tip down.”  I went
> > from,
> > > “Keep your tip down so you can find the stairs that are coming up.” to
> > “Keep
> > > your tip down because I want you to find ‘something’ coming up.”  I
> would
> > > then say, “Wow, keeping your cane tip down allowed you to find those
> > stairs.
> > > Good for you!”  Did he ever become perfect in keeping his tip down?
>  Most
> > of
> > > the time, but not always.
> > >  When he was frustrated, he hit me and screamed.  Softer tones in my
> > voice
> > > helped a lot and when I could sense that he was frustrated, I gave him
> a
> > few
> > > minutes to stand there, rest, and listen to the surroundings then we
> went
> > > on.
> > >
> > > The student who would toss his cane over the bus – well with him, he
> had
> > to
> > > go find his cane and then continue on with what he had to do.  He is
> > > autistic and had very limited verbal skills.  His tossing of the cane
> no
> > > longer happens.  I’ve walked around with him and showed him how much of
> a
> > > valuable tool the cane is. We walk into bathrooms, closets, carpeted
> > rooms,
> > > non-carpeted rooms, narrow hallways, open spaces and just tap the metal
> > tip
> > > of the cane to listen to the different sounds it makes.  Now, sometimes
> > when
> > > I see him in the hallway he will be walking along and then stop by a
> room
> > > and quickly tap the cane in the doorway and then continue along the way
> > w/o
> > > going in that room.  I’m not sure if he is checking to see if that is
> the
> > > classroom he is seeking or if he just wants to listen to the sound the
> > cane
> > > tip makes.  Perhaps he realized the cane is a tool.
> > >
> > > What about the student who bites his cane or other student’s canes in
> > > half?  Well, this student I was truly worried about because I didn’t
> > think
> > > that was good for his gums.  So, I did change his cane to the metal
> cane.
> > > His cane is now heavier though and he has used it to hit others
> > (teachers).
> > > When we walk with him, we are sure not to have him too close to other
> > > students.  He is non-verbal and autistic.  After awhile, I’m going to
> try
> > > the lighter NFB cane again…
> > >
> > > I have one student who would not walk forward unless I placed a hand on
> > her
> > > shoulder – now I’m down to a ‘finger’ on her shoulder.  Another
> > non-verbal
> > > student, I discovered, is left handed’ now she does a great job with
> her
> > > cane.  (Here I was trying to force her to be right handed.)  I use a
> cane
> > > all the time because of my vision loss but I have another student who
> > does
> > > much better if her teacher’s assistant is also carrying a cane.
>  Perhaps
> > she
> > > doesn’t want to be the ‘only’ one with a cane.
> > >
> > > Bottom line….Each student with extra special needs have their own
> > triggers
> > > and it is up to us to learn what those are.  Once that happens, ‘we’
> can
> > > travel forward.  “We” - meaning all of ‘us’ (teachers, parents - and
> the
> > > student, too.)  We ‘all’ can travel forward.  We have to learn/discover
> > what
> > > triggers the unwanted behavior (hitting, swinging, biting of the cane
> and
> > > others, etc) and try to avoid those triggers.  Taking the cane away can
> > be a
> > > simple fix for the adult but it is just rewarding the student for what
> > > he/she wants anyway – avoidance of being required to be independent,
> > > required to work, wants to have someone else do the ‘work’ by supplying
> > > human guide technique.  We also have to discover/learn what triggers
> > their
> > > good behavior such as the student who needs to have the touch on the
> > > shoulder, have the cane in the left hand, or needs to NOT be the only
> one
> > > with a cane.
> > >
> > > Lesley, I hope this helps.  Feel free to contact me – owinm at yahoo.comto
> > > talk in more detail about your child’s individual O&M needs.  (My
> > daughter
> > > is also blind.)
> > >
> > > Merry-Noel Chamberlain, NOMCT
> > >
> > > --- On Fri, 12/18/09, Carol Castellano <blindchildren at verizon.net>
> > wrote:
> > >
> > >
> > > From: Carol Castellano <blindchildren at verizon.net>
> > > Subject: Re: [blindkid] Cane Travel for 4 year Old
> > > To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" <
> > > blindkid at nfbnet.org>
> > > Date: Friday, December 18, 2009, 5:42 PM
> > >
> > >
> > > 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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