[blindkid] Rolling tip

Wed Sep 22 17:53:10 UTC 2010

I agree with Marie. 

Even if you previously agreed to back away and let them guide things for whatever reason, you're still the parent. You tried what they wanted and you decided you no longer wish to. If they find that inconvenient, well, that's a shame for them. The arrogance of the school systems never fails to amaze me, especially where blind kids are concerned. The don't get to pick your child's cane for you anymore than they can select her lunch for her or choose her shoes or clothes-- or maybe tell you what sort of car to drive or house to live in. Her cane is a personal choice. One day. she'll make that choice on her own, but for now, you get to decide for her-- NOT the school, her O&M instructor, etc.

I wonder of they are also trying to regulate the brands and styles of walkers or crutches or even wheelchairs (or any other assistive equipment) which other students may require. I don't know what it is about canes, but for some reason, various "professionals" seem to think they have some right to tell blind people what sort of canes they "must" use or sometimes even when they can use them at all. I say you should use what suits you and change only if and when you decide on a better option.

Lots of parents of countless children (a few blind but most sighted) make decisions I disagree with all of the time. I suspect that applies to many of us here-- I have three kids and those are the ones I get to make decisions about, period. Others can recommend things but my wife and I are the bosses with our three youngsters.

There are many things worth discussing here and you have plenty of good reasons to be frustrated, but to begin with, I'd try to be calm and polite, yet one way or another (informally if it is possible or by way of an IEP if not) I'd make the people you're dealing with aware that just like with every other child in the school, you are this child's parent and you'll be the one making certain decisions.

I think these professionals sometimes forget (as we have discussed before in our own IEP meetings) that the children and their parents are the ones dealing with solutions for these kids 24/7, from now until adulthood, and these choices can effect the kids for life. Professionals come and go and even those few who stay around for many years are still only "part time" in the kids lives. They need to understand that and respect it, even when they disagree with parent choices.

Richard

On Sep 22, 2010, at 1:09 PM, Marie wrote:

> 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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> 
> 
> 
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