[blindkid] Rolling tip

Wed Sep 22 17:09:51 UTC 2010

Please go to wrightslaw.com. They have lots of great training on being your child's advocate for a variety of IEP needs.

About the FVA/LMA. Torrie has had a significant change according to a doctor's report. That alone is enough to get a new assessment.

I hope that you are able to work things out with the school but please do not feel trapped by them. You will make more impact in Torrie's life than they will. Seek information from this list and those school people, doctors, and other therapists and after you feel fully informed, make the best decision you can. You do not have to follow their plan especially if you believe it is unsafe.

Marie (mother of Jack born May 2005)
See glimpses of life with my determined son who is developing in his own way at his own time at http://allaccesspasstojack.blogspot.com 
Sent from my Verizon Wireless BlackBerry

-----Original Message-----
From: Doreen Franklin <doreenproverbs3 at bellsouth.net>
Sender: blindkid-bounces at nfbnet.org
Date: Wed, 22 Sep 2010 08:13:07 
To: NFBnet Blind Kid Mailing List,\(for parents of blind children\)<blindkid at nfbnet.org>
Reply-To: "NFBnet Blind Kid Mailing List,
	\(for parents of blind children\)" <blindkid at nfbnet.org>
Subject: Re: [blindkid] Rolling tip

Heather and others ....

This is the other Doreen, from FL  -- interesting that there are 2 Doreen's on 
this list ... I have the kindergartener with the ambutech cane. I have a 
"stupid" question .... we are continuing to have problems with our district -- 
very long story but at least we now have a CERTIFIED (COMS) O&M instructor so I 
am thankful for that!

Here is our history: Torrie just turned 6 and she just started a kindergarten 
class; she was in a pre-k class last year thru the district. My hubby and I put 
the cane in our daughter's hands back in March 2009. It was an NFB light cane 
which she was able to use, but did get stuck in the cracks as well as on 
the grass. It was suggested by a different O&M instructor (one from FL State 
University which is the university teaching vis disabilities) to get an ambutech 
because the rolling tip was easier in many settings, although the cane 
was heavier. Torrie did not have instruction from the district until April 2010 
- another long story -- but was able to use it and fold it! Her first O&M 
instructor (different from this certified one above) taught her diagonal 
technique only and she is using that one everywhere, but on the playground she 
is learning 2-touch. (We have a screwed up system and I have been told to let 
the "professionals" do the teaching and that my "technical assistance" is not 
needed ... go figure that one out! I am trying to "obey" but it is difficult 
knowing my child is not safe. I have asked for instruction/cues so that we can 
reinforce at home and even that is "hard" to get!). Torrie received a 
new Ambutech cane in August, which is too heavy for her and she has no upper 
body strength to fold it ... unsure if that is even being addressed at school. 
 I have a longer NFB cane for her which is clearly much lighter but I am not 
sure the "what" she is being taught -- if she is being taught to feel the 
feedback from the cane because she does use whatever limited sight she has. She 
has had shades on with the cane and THAT is when she can actually use her other 
senses for feedback from the cane. I suggested the shade to her old O&M, but it 
was disregarded. her visual acuity has decreased from 20/70-80 in March 2009 to 
20/800 in July 2010 --near vision; distance went from 20/100-125 in March 09 to 
20/400 in July 10). She also has numerous other conditions including false 
lenses for the cataracts which were removed, nystagmus, and high bilateral 
myopia (which might be degenerative). There are a few more things, but those 
interfere with her reading. I cannot get a new FVA or LMA until December!

Question .... with being told to basically back off, how do we get around the 
length and weight of the cane? How do I propose it that maybe the NFB cane is 
better? That she should be under shades for O&M instrux at school to help her 
gain her confidence in the cane? I personally think she needs to use constant 
contact (which is in the IEP) but don't even know how to approach any direction 
from me to the O&M. More FYI ... we are and are not part of the IEP team ... we 
have been told several times that we are not the "professionals", but I do know 
more than most about my daughters vision and what she can and cannot do, but no 
one wants to listen to us -- Yes, I am the 'problem' mom who is looking for all 
the tools for my daughter to have and to know how to use those tools correctly. 
I have not even had an "introductory" call or email from the new O&M ... which 
does bother me. No info coming home from TVI or O&M on services rendered to my 
daughter ... I have rely on the 6-yr old! I know .... We have an IEP scheduled 
for next Wed and I want to write in that reports will come to me after services 
with what was done with my child. She is getting bare minimum for services and 
service times! 

We are in a new school, and the only "returning" member from my old team is the 
TVI and she is not even "recognizing" that my daughter's visual acuity 
drastically decreased (per the ophthalmologist from Bascom Palmer that we've 
been seeing for the last 4 yrs! they have even done further testing on her to 
see why the acuity decreased and her pressures are high (no sign of glaucoma per 
the photos at this point). The TVI told me that Torrie "can see a lizard on the 
ground and can find the O&M at 10 feet away" ... everything I brought up to her 
she literally refuted! My daughter did not even recognize me when I surprised 
her for lunch and she could not tell which of her friends sat next to her -- 
both situations she was about 2-3 feet away from our faces. She cannot discern 
things on my cedar chest unless she is RIGHT ON TOP OF IT ... and her friends 
could tell things at 10 and 6 feet away. When she is reading large print (40 
and 48 font sentences I make up and have her tell me the letters), the paper is 
ON her right lens of her glasses and she is not using her left eye (she has no 
convergence either). She also does not get all of the letters correct. When she 
comes home, she is fatigued and very stressed. Doing the 1-2 pages of homework 
is difficult, and last night, I decided we would do it over the weekend when she 
is "fresh" and not stressed from school. She has behavioral problems which we 
have been dealing with for the last year, and with school starting again 4 weeks 
ago, her tantrums have increased (i know why but cannot get her to talk to us or 
a therapist we are seeing). She literally wants to see like us is what she tells 
me and she HATES her cane. The common sense things I tell her are jsut words to 
her .... She has said she is "AFRAID" that the teacher will yell if she tells 
the teacher she cannot see or needs to rest her eyes! How scary is that .... but 
that is the PTSD I believe.

I know this is a lengthy way of asking how to persuade the district to at least 
listen to me and "consider" what we are asking/saying. Should I have her use the 
ambutech at school and the NFB one at home? Will that screw her up? (She is 
smart but she also has ADHD issues and PTSD, and there may be autism/aspergers). 
What are my "options" at this point ... I don't know how to approach this so 
that Torrie can benefit without me becoming "the bad mother" even worse than I 
am perceived at this point. 

Any and all help and suggestions would greatly be appreciated. I know we 
actually have rights but most times, we don't feel like they even want our 
input, and unfortunately, Torrie is the one suffering!  I am very thankful for 
this list ... it is awesome!!!!

Doreen  in Florida
mom to Torrie and Bryanna

________________________________
From: H. Field <missheather at comcast.net>
To: empwrn at bellsouth.net; "NFBnet Blind Kid Mailing List, (for parents of blind 
children)" <blindkid at nfbnet.org>
Sent: Tue, September 21, 2010 8:52:14 PM
Subject: Re: [blindkid] Rolling tip

Hello Marie,
In my experience as a blind person and an educator of young blind 
children I have always found the NFB canes to be best for little ones 
as they are so sensitive with the metal tip and are also light. They 
work well for constant contact and lots of adults use a combination of 
constant contact and tap-tap. I would get Jack a cane that comes up to 
his forhead. This means that he will have plenty of warning when his 
cane tip touches something and, I have found, that when boys learn 
they have plenty of stopping time they tend to move about more 
quickly. Also, the length will mean that he can use his cane with a 
relaxed right arm down by his hip and will still have plenty of length 
to ensure that he is able to cover his body width. It will also mean 
that you won't have to get a new cane quite so soon.

I personally don't walk around with my arm in front of my stomach and 
trying to swing a cane from the middle of my body. This is incredibly 
uncomfortable and inevitably the cane gets caught on something and 
pokes one in the stomach. If one hurries about like I do such pokes 
are extremely hard and uncomfortable. I use my cane by my right side 
much as you are reporting Jack likes to do. There is much debate "in 
the field" about O&M for children but much of it is based on people's 
personal opinion and I'm not aware of any well controlled, 
longitudinal studies which have examined the effects of various early 
cane type or technique on the adult mobility of functionally blind 
cane users. As a blind person I consider myself the expert on what 
things work for me personally. I would encourage you to watch what 
works for Jack (within age-appropriate norms) and just give him plenty 
of opportunities to develop independent, self-initiated confident 
movement.

Some folks like the rolling tips for young dchildren as they are 
heavier and tend to keep the cane on the ground more. However, they 
are nowhere near as sensitive in terms of the feedback they give a 
cane user and, in my experience, it has been better simply to teach 
the child to keep their cane on the ground and let them get all the 
added feedback from the metal tip. Again, I'm sure there are those who 
will disagree with me but, I have found, most of them are sighted and 
do not use a cane to make their way through a tactile world where the 
smallest amount of extra information can make the hugest difference.

You can get a free cane for Jack every 6 months from the NFB website. 
I would encourage you to go ahead and get him a new, light, long cane 
there. You could also get him the other type and give him experience 
with both. However, I wouldn't let him make the choice yet as to which 
cane he used exclusively. He is too young to realise all the info his 
roller tip cane isn't give him. Instead give him opportunities to use 
both.

I wouldn't fret about not having an O&M instructor; being mobile and 
oriented as a blind person moving through the world is 90% confidence 
and belief in one's self and 10% skills. I've never had a formal O&M 
lesson in my life and I'm am a confident and competent traveller.

Happy trails with your young, cane-wielding adventurer.

Warmly,

Heather

--- Original Message ----- 
From: "Marie" <empwrn at bellsouth.net>
To: "Blindkid email" <blindkid at nfbnet.org>
Sent: Tuesday, September 21, 2010 6:48 PM
Subject: [blindkid] Rolling tip

Hello everyone,
Jack is growing so fast that it's time to get him another cane. We are 
thinking that we will get him a slightly longer one this time and were 
hoping to get one with a rolling tip or buy a rolling tip. With Jack's 
small hands and his modified grasp he gets very fatigued attempting to 
tap tap and tends to do constant contact with his cane. We thought a 
roller tip might be a bit more conducive to constant contact. We also 
thought we might get a longer one since when his grip fatigues, he 
tends to put the cane between his right hand and right hip to hold it. 
A longer cane would make this a bit easier. He actually does more side 
to side sweeping holding the cane this way--hard to explain but it 
works for him.

And no we don't have an O & M instructor. We lost our school services 
when we decided to keep him in preschool this year.

So anyone know where I can get a straight unfolding cane with a 
rolling tip or know where I can buy a rolling tip to fit a straight 
unfolding cane...I did not see any at the NFB store but if it's there 
somebody please point me in the right direction.

Thanks!

Marie (mother of Jack born May 2005)
See glimpses of life with my determined son who is developing in his 
own way at his own time at http://allaccesspasstojack.blogspot.com
Sent from my Verizon Wireless BlackBerry
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