[blindkid] Cane Travel for 4 year Old

Sun Dec 20 15:22:30 UTC 2009

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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