[blindkid] Cane Travel for 4 year Old

Susan Harper sueharper at firstchurchgriswold.org
Sun Dec 20 17:25:04 UTC 2009


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.com to
> > 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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