[blindkid] blindkid Digest, Vol 121, Issue 17 Discussion of the right goals and IEP for a legally blind child (Pui via blindkid)

Wed May 21 18:39:34 UTC 2014

I have LCA, and had 2200 as a child, and as an adult 2600 in one eye, and
2800 in the other. I used to see all colors, now only some.  and he must
read Braille! It was horrible flipping back and forth, and as an adult I use
braille, and rarely to never print. Keep fighting!

Also there is a yahoo group for children and adults with LCA, and it is just
called LCA.
-----Original Message-----
From: blindkid [mailto:blindkid-bounces at nfbnet.org] On Behalf Of Alyssa via
blindkid
Sent: Wednesday, May 21, 2014 1:35 PM
To: Pui; Blind Kid Mailing List, (for parents of blind children)
Subject: Re: [blindkid] blindkid Digest, Vol 121, Issue 17 Discussion of the
right goals and IEP for a legally blind child (Pui via blindkid)

Hi Pui and listers in general,

I'm sorry to hear about this experience, but unfortunately, it is far too
common. I too have LCA and was given all kinds of grief from my school
district. I've never had enough vision to read print, so they were forced to
provide Braille instruction. I faced many other issues regarding other
aspects of surviving the school day. The school administration and the TVI
wouldn't allow me to use a cane in school. Their logic was that a cane is
dangerous and will trip other students. I finally got a new O and M
instructor who argued on my mom's side saying I needed to use a cane in
school. It shouldn't have taken them that long to agree, but no matter how
many times I got injured during sighted guide, since the school made
students do it, they didn't want to budge. It was finally mostly resolved
with few exceptions including fire drills. I'm telling this story to let you
know you aren't alone in these struggles. Feel free to contact me with any
questions about LCA, blindness in general, or for any help you need. The
email address I'm using to write this is a good one to reach me at.
Alyssa Henson

Sent from my iPhone

> On May 20, 2014, at 9:21 AM, Pui via blindkid <blindkid at nfbnet.org> wrote:
> 
> Thank you Jennifer for sharing your sons' experience. Those are the very
same issues I anticipate for my son at the same age, and that is why I am
standing my ground. 
> 
> My understanding of IDEA is that for any blind or VI child, braille is the
default. My son is already considered "legally blind" so it's not like I'm
asking for braille because he is only a " little" visually impaired.
> 
> Last night, I sent off an email to my son's ophthalmologist to write to
the district to confirm that LCA is degenerative, and that his 20/250 vision
with nystagmus (dancing eyes), reduced field of vision and eye fatigue is
NOT the same as another student with 20/250 vision and without nystagmus
etc. Due to these factors, his ability to read even large print is
compromised.
> 
> Today, I plan to look at our state standards for kindergarten and align
them with his braille/VI goals so the IEP goals justify the service minutes
and daily instruction. Then I plan to forward case studies of students with
low vision who were given mostly large print. These studies detail how the
students started falling behind in third grade when the demands of the
curriculum increased. I want the district to know that I know that this will
happen, and that I did tell them this even before he started kindergarten.
My hope is that they would not want to be proven negligent in providing a
FAPE when his braille skills are not enough and his print skills not
sufficient once he's in third grade.
> 
> Yes, braille is hard at first for everyone but once the child has mastered
it, schooling becomes easier for everyone involved. Goodness knows I would
like it easier too!
> 
> Thanks,
> Pui
> Sent from my iPad
> 
>> On May 20, 2014, at 6:51 AM, Jennifer Duffell-Hoffman via blindkid
<blindkid at nfbnet.org> wrote:
>> 
>> Re: Discussion of the right goals and IEP for a legally    blind
>>      child (Pui via blindkid)
>> 
>> I want to thank Pui and Heather for having this discussion on our
listserve.  The discussion, both from the standpoint of vision loss and the
school's response to my earliest inquiries about Braille services, reflects
my sons' experience very closely.  My sons are 15 and 13 and both, as of
this school year, know the Braille code but are far from being Braille
literate.  Because they are not Braille literate and because they cannot
sustain print reading they face a jumble of accommodations to get them
through each school day, each quiz/test/standardized test and PSAT/SAT. If
they were Braille literate things would be much simpler not only for my
sons, but also for the classroom teacher and the TVI. 
>> 
>> My understanding of IDEA is that the school system must prove that
Braille is NOT an appropriate medium for the particular student--it seems to
me that the student has to be Braille-literate before it can be proven this
is not an appropriate reading medium! 
>> 
>> 
>> 
>> Jennifer A. Duffell-Hoffman
>> NFB BELL in SC, State Coordinator
>> SC Parents of Blind Children, State President Lancaster, South 
>> Carolina
>> Mobile: 803-287-5391
>> E-mail: jaduffell at yahoo.com
>> 
>> The National Federation of the Blind knows that blindness is not the
characteristic that defines your or your future. Every day we raise the
expectations of blind people, because low expectations create obstacles
between blind people and our dreams. You can have the life you want;
blindness is not what holds you back. 
>> 
>> 
>> ________________________________
>> From: via blindkid <blindkid at nfbnet.org>
>> To: blindkid at nfbnet.org
>> Sent: Tuesday, May 20, 2014 8:00 AM
>> Subject: blindkid Digest, Vol 121, Issue 17
>> 
>> 
>> ----- Forwarded Message -----
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>> Today's Topics:
>> 
>>   1. Re: 
>>   2. QWERTY mPower for Sale (Debby B via blindkid) Thank you Heather 
>> for taking the time to reply. You write so eloquently of the struggles I
am having with the IEP, and the reasons why. I know the IEP team wonder why
I am "making my child blind" by insisting on braille. Firstly, My husband
and I did make our son blind because we are both carriers of the genetic
mutation that caused his LCA!! Secondly, now our job as parents is to ensure
he gets those blindness related skills so his vision impairment will enable
him to carry on with life just like his sighted brother. When I found out my
son had LCA and it was degenerative I asked myself the same questions and
did some research of low vision folks and their experiences with schooling.
I quickly concluded that my son would be functionally illiterate without
braille when the day would come when he would lose more vision. Of course I
don't look forward to him losing more vision but it is what it is.
>> 
>> I just requested the district perform a LMA on my son. A few months back
the CA school for the blind did a technology assessment on my son at my
request and concluded that technology would be a part of his future. The VI
department did not label my son as a dual learner. I did. Their philosophy
is to not teach a student braille until they go completely blind. However to
their credit they did listen to me after I showed them the braille laws
under IDEA.
>> 
>> I know my child has a lot of functional vision and I do want him to
utilize it. I am not asking for him to do all his work in braille. I
understand that it will mostly be print, but I do want him to use braille on
a daily basis so he is a part of both worlds. 
>> 
>> I remember reading an article in Reflections about your advice to a 
>> parent of a low vision child learning braille. I purchased the Mangold
program and I put the sleep shade on him for the first few months. Now he is
pretty good at using his fingers without trying to read braille with his
eyes which he did a lot of last year. Seeing and hearing him read braille
letters, contractions and basic sentences (with guidance) tells me that
braille is working for him. He has some bad habits that are typical for
beginners such as rubbing the braille sometimes, not always tracking
correctly, not using all his fingers, incorrect fingering on the brailler
etc. However I believe those are reasons why he needs daily braille. It
isn't the minutes that matter as much to me as the fact that he continues
daily instruction at school. Otherwise he gets the impression that school is
for print everyday, and braille sometimes if the TVI shows up. I believe
that will make him resistant to braille because he likes to do what everyone
else is doing and is even sensitive about wearing glasses sometimes. I have
read too many stories of adults who wished they had learned braille as a
child.
>> 
>> Most of my comments I have made public on this forum even though many of
you have been kind enough to offer an opportunity for me to discuss this
privately. I have chosen to do it like this to aid other parents with low
vision kids who may have similar issues.
>> 
>> Thanks,
>> Pui
>> 
>> Sent from my iPad
>> 
>>> On May 19, 2014, at 1:14 AM, Heather Field via blindkid
<blindkid at nfbnet.org> wrote:
>>> 
>>> Hello Pui,
>>> Sorry this e-mail is so long but I really wanted to share all my 
>>> thoughts with you. Congratulations on standing up to the IEP
>>> 
>>> team. That's a hard thing to do. You're obviously a great mum!
>>> I would agree that these goals are too easy. He should know more 
>>> than this at the end of kindergarten. Also, it may be that
>>> 
>>> you are dealing with a more complex situation than you realise. I 
>>> have observed this situation many times when attending IEP
>>> 
>>> meetings as an advocate with parents who are fighting for braille 
>>> for their child. To most IEP team members, including the
>>> 
>>> TVI, parents Insisting on braille for a child who appears to be 
>>> successfully functioning like a sighted child, seems bizarre,
>>> 
>>> even cruel and harmful to the child; because, to them, "braille" 
>>> equals "blind". They cannot imagine why you would want to
>>> 
>>> "make your child blind". This reflects their lack of experience with low
vision adults who use braille as one of their tools. 
>>> 
>>> Yet, to you, understanding the degenerative nature of your son's eye 
>>> condition, and knowing that braille is an invaluable
>>> 
>>> tool in the skills toolbox of many successful low vision adults, you 
>>> are in a position to see the situation from a different,
>>> 
>>> completely functional, unemotional perspective. I believe you're 
>>> taking the right approach in trying to reason with the
>>> 
>>> district staff. You are on a mission to educate them regarding your
son's real learning media needs, despite the TVI. 
>>> 
>>> However, rather than arguing with them about instruction time I would
take another tack. 
>>> In the light of no hard evidence, IEP team members usually give far 
>>> more weight to what the "professional" TVI says than they
>>> 
>>> give to what the parent says. They usually write you off as a 
>>> difficult parent who doesn't really understand what's going on
>>> 
>>> with their child.So, what you need is evidence to show the IEP team 
>>> that children with some functional vision are often
>>> 
>>> taught braille on the basis of researched, needs-based factors. To 
>>> this end, I believe that having your son assessed, using
>>> 
>>> the NFB's Reading Media Assessment (RMA), would give a clear, 
>>> evidence-based determination on whether or not he should be
>>> 
>>> treated as a duel learner or a braille reader/writer. The RMA does 
>>> take future learning needs, as well as parent observations
>>> 
>>> into account in determining the results. It also considers the 
>>> future needs of your child as a learner with this particular
>>> 
>>> eye condition. In my experience, most TVIs don't have a grasp of the 
>>> future ramifications of the reading media decisions they
>>> 
>>> make for children and their decisions are driven much more by the 
>>> emotions around "making a child blind" by insisting they
>>> 
>>> use braille, or by the need, albeit unconscious - to lessen their 
>>> heavy case load and keep a child using print as long as
>>> 
>>> possible. They already have heavy case loads and they don't want to 
>>> have to find 300 minutes per week for a child who, in
>>> 
>>> their opinion, doesn't need braille only instruction. Furthermore, 
>>> the members of your son's IEP team are almost certainly
>>> 
>>> ill-prepared to make an informed decision on his future reading media
needs for the three following reasons.
>>> 1. they fail to consider that your son's vision is currently the 
>>> best it will ever be; it will only get worse from here. Even
>>> 
>>> those with normal vision experience some degree of vision loss as 
>>> they age. so, even under normal circumstances, your son's
>>> 
>>> vision is going to get worse as he ages. With so little vision 
>>> already, any degree of loss has major implications for his
>>> 
>>> functional use of print to read and write. 
>>> 2. They do not really understand the degenerative nature of his eye 
>>> condition and how that plays out, with possible vision
>>> 
>>> loss occuring even while he is still in elementary school. They 
>>> don't want to consider it for all sorts of emotional,
>>> 
>>> personal fear-based reasons.
>>> 3. Few, if any, of the people on the IEP team - including the TVI, 
>>> who are supposed to be considering your son's future
>>> 
>>> reading meadia needs, will even be acquainted with a blind adult, 
>>> let alone a person with your son's specific, degenerative
>>> 
>>> eye condition. They don't know anything about what blind adults need to
function successfully in the sighted world. 
>>> For these reasons, they are ill equipped to make any fact-based decision
regarding his future reading media needs. 
>>> 
>>> The place to look, when considering your son's future reading media 
>>> needs, is among the adult population of blind and vision
>>> 
>>> impaired people. . As an adult blind person I have a number of adult 
>>> friends who have your son's eye condition and I can
>>> 
>>> assure you that not one of them use print to achieve the tasks of 
>>> daily living and working. Some of them have the vision to
>>> 
>>> read print if they need to,but braille is their medium of choice. 
>>> One woman I know has enough vision that, if she wears very
>>> 
>>> strong glasses, she can see to read regular print. But, she only 
>>> uses those glasses if she needs to see something she hasn't
>>> 
>>> labeled in braille, or to check a child's worksheet etc. It is such 
>>> an unpleasant, eye-straining, head-ache inducing
>>> 
>>> experience that she only uses those glasses in essential, work 
>>> related situations. She doesn't even read her print mail with
>>> 
>>> them; she scans it into her computer or uses a human reader. So, you 
>>> and I know what a difference braille will make in your
>>> 
>>> son's life as a blind adult. 
>>> 
>>> As a blind person who is a certified special educator myself, and 
>>> knowing all of this other influencing background
>>> 
>>> information, my hunch is that the TVI isn't doing what's best for 
>>> your son by labeling him as a duel learner. In your
>>> 
>>> position, I would request he be assessed using the RMA. The RMA is 
>>> the only assessment which is research-based and the
>>> 
>>> results have been found to be extremely reliable over time. 
>>> Alternatively, his current assessment, the one used to label him
>>> 
>>> as a duel learner, was done using a Learning Media Assessment (LMA). 
>>> The LMA is not research-based. It is a set of tests and
>>> 
>>> suggested observational situations that a TVI can use to make a 
>>> subjective assessment of how well a child can use their
>>> 
>>> vision to function in the school setting. In this assessment, a 
>>> child's vision is assessed as being functional based on
>>> 
>>> factors such as how well they use visual aids, preferential seating, 
>>> optimal lighting etc. Ie. it assesses how functional the
>>> 
>>> child's vision is under optimal conditions at school. Worse, the 
>>> assessment is conducted by the same TVI who will be
>>> 
>>> providing the instruction. She gets to decide, on the basis of her 
>>> subjective assessment, whether she wants to teach this
>>> 
>>> student braille or not. At very least this can be called a conflict 
>>> of interest. On the other hand, the RMA is research-based
>>> 
>>> and also asks questions of the parent(s) and the classroom teacher, 
>>> does not permit the use of visual aids or optimal
>>> 
>>> lighting etc. It seeks to gather information on vision use by the 
>>> child at home and in the community in an effort to
>>> 
>>> establish the true, real world "functionality" of the child's vision 
>>> over time and strain during the day. You are legally
>>> 
>>> allowed to request that your son be given an independent assessment 
>>> for which the school district must pay. the Reading Media
>>> 
>>> Assessment (RMA) is provided free, online by the NFB. The tester 
>>> fills in the information online where the assessment and
>>> 
>>> results can be accessed by anyone who is given the private login 
>>> info. Everything is provided, even printable reading
>>> 
>>> passages for each grade level, and instructions for how the student 
>>> should sit while reading, and that no reading aids can be
>>> 
>>> used during testing. The results/Report/recommendations can be 
>>> printed out and presented at an IEP meeting. So, it should be
>>> 
>>> very easy to find someone to administer an independent RMA, eg. a 
>>> counselor, a psychologist, a special education teacher, or
>>> 
>>> a TVI from another district could do it. When the members of the IEP 
>>> team see the evidence, obtained independently using a
>>> 
>>> research-based assessment tool, it will be extremely difficult for 
>>> the TVI to refuse to teach your son using the reading and
>>> 
>>> writing media which the assessment says he needs. If the TVI objects 
>>> you can request an explanation of the objections to the
>>> 
>>> results of a research-based assessment tool administered independently
by an unbiased tester.
>>> I suggest that you take this approach because, if your son turns out 
>>> to need braille exclusively and not to be a dual
>>> 
>>> learner, then this "how much time" argument will disappear and no 
>>> time will be spent on goals such as developing visual
>>> 
>>> efficiency and tracking. . You will be able to say that you are now 
>>> not discussing how much "braille" time your son receives
>>> 
>>> but, instead, how much "reading and writing" time he gets; braille 
>>> is just the format/code in which he is reading and writing. I 
>>> encourage you to be proactive and continue to reject the current IEP 
>>> and request a new assessment and,
>>> 
>>> on the basis of that, a new IEP. This assessment can be done within 
>>> a day or two of your request as it takes only a short
>>> 
>>> time to administer it and, as soon as the parent report, and 
>>> classroom teacher report if you think it will be helpful, are
>>> 
>>> entered on the website the results will be there at the click of one
button.
>>> not signing it or arguing for more time will not be as effective as 
>>> having your son assessed using the research-based Reading Media
Assessment.
>>> e-mail me off list if you'd like to chat about this more. I often 
>>> attend IEP meetings in my area, assisting as a parent advocate in 
>>> the same kind of disagreements. So, I am very aware of how hard they 
>>> fight to keep from having to provide braille.
>>> Again, sorry for the long e-mail but I hope it helps.
>>> Warmest regards,
>>> Heather Field
>>> _______________________________________________
>>> blindkid mailing list
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>> 
>> 
>> Winona is selling her 32-cell Braille Note QWERTY mPower. It is in
like-new condition, although it hasn't been used for several years and the
battery has died. All cords, straps, instruction books, cds, and case are
included. Due to the battery issue, she is only asking $1000.
>> 
>> We would love to deliver it to someone at convention!
>> 
>> 
>> Please contact Winona at wbrackett42 at gmail.com or myself at
bwbddl at yahoo.com.
>> Thanks,
>> 
>> 
>> Debby Brackett
>> bwbddl at yahoo.com
>> 
>> ~"Kindness is a language which the deaf can hear and the blind can 
>> read."~Mark Twain
>> 
>> 
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