[blindkid] 5year old with low vision (again)

Sun May 13 15:19:11 UTC 2012

The reading stamina and eye fatigue are at the core of why Braille is so
important for Matthew, who also has albinism.  Eye fatigue became a factor
for him in first grade, where he had been spending about an hour a day
learning Braille, but spending the rest of his day doing his school work in
large print.  He kept getting slower and slower as the day progressed, and
by the time he was supposed to do homework, he spent an hour or more on a
10 minute worksheet.  Now, nearing the end of 3rd grade, when they do
reading fluency assessments (which are always relatively short passages),
he still tests much faster reading enlarged print than reading Braille.
 But he cannot read for a sustained period of time in large print.  He
cannot read Magic Tree House books in print... it's too fatiguing.  Yet he
can read Harry Potter books in Braille.  He prefers reading Braille because
he can do it without eye fatigue and neck strain.  Because of Braille, he's
finally performing on grade level and keeping up with his peers, without it
we would already be in a position of considering retention.   Holly (of
course!) raises the right point in asking about the future.  It takes an
investment of time to become proficient in Braille, but for our son it is
an investment that has reaped many benefits.

You also asked about O&M.  Matthew is viewed by many as "amazing" for how
well he uses his vision to get around.  I frequently hear that "you'd never
know" he had any vision issues.  But O&M training and learning to use a
cane are very important.  One of his biggest challenges now that he's older
is that he wants to do all of the things other kids his age do (like cross
streets), and he wants to trust his vision.  His O&M teacher has worked
with him on learning to navigate, using vision aids (like a monocular) and
looking for landmarks, and also on non-visual techniques like using his
cane. The focus is on making sure he can travel safely and independently.
 Again, the focus needs to be on the future.. when he is crossing streets
by himself.

Karen

On Sun, May 13, 2012 at 7:12 AM, Holly Baker Miller <hollym12 at gmail.com>wrote:

> ::::waves at Jill::::
>
> He may be doing ok with that font size now but will he continue to perform
> on the same level as his peers in the future?  That is the question.
>
> A big component in winning our case was the evaluations that tested his
> reading stamina.  When the district evaluated him, they only evaluated him
> using short passages.  Our independent evaluations tested him over longer
> periods of time (5-10-15-20 minutes) and provided detailed data to show how
> his speed, comprehension and retention significantly fluxuated over the
> time period.  Also he was tested at different times of the day to show how
> eye fatigue effected his performance.
>
> Most of these tests were performed when Hank was in 3rd & 4th grade, as an
> established reader. I'm not sure how that is done in a very early or
> pre-reader.  I'm never sure how to answer that question, I would love to
> hear anyone's take on it.
>
> Holly
>
>
>
> On Sat, May 12, 2012 at 3:48 PM, Jill Fass <jillfass at gmail.com> wrote:
>
> > We know them very well!!! I have known Hank and his family for about 3
> > years. Hank and Andy both have albinism..
> >
> > As for Andy, he seems to be ok as long as the font size is big enough.
> > I am fighting with the commission about that as well. They say font
> > size 14 and Andy's dr's say including the one at the NIH say font size
> > 18 to 24. UGH
> >
> > On 5/12/12, Doreen Franklin <doreenproverbs3 at bellsouth.net> wrote:
> > > Jill ... go to the link below ... mom in NJ won Braille for her son
> > after 3+
> > > yr fight for Braille. Hank also has albinism and nystagmus.
> > >
> > >
> >
> http://nfb.org/national-federation-blind-applauds-new-jersey-ruling-braille-instruction-blind-child
> > >
> > >
> > > Doreen
> > >
> > > From: Jill Fass <jillfass at gmail.com>
> > > To: blindkid at nfbnet.org
> > > Sent: Saturday, May 12, 2012 1:35 PM
> > > Subject: [blindkid] 5year old with low vision (again)
> > >
> > > I had sent this to from my work email by accident!!! This is my correct
> > > email
> > >
> > >
> > > Hi All!
> > >
> > > I am new to this blind kid thing so I hope I am doing this right.
> > >
> > > I have a 5 year old boy with albinism. He has low vision. His vision
> > > is about 20/200.  Outside in the sun much worse. What can an O and M
> > > person do for my child. It seem like since my son has sight our state
> > > Commission (not for) the blind does not do much for my son. He has not
> > > had any O and M services since he was 3. They were in the backyard for
> > > maybe 20 minutes and said he is fine. Then she has him at his
> > > preschool and said he is fine. Call when he goes to elem. school. I
> > > feel stupid, is my son missing something?
> > >
> > > Also, can anyone give any insight on Low Vision evals. I want my son
> > > to have a cctv and a monocular for kindergarten. Are there specific
> > > questions I should ask? When should he start keyboarding? They will
> > > not give him Braille because he has too much sight for that. He does
> > > seem ok with large print. Then again he is only 5. He has nystagmus so
> > > I know reading will become a problem when he is older. I am sorry with
> > > so many question..
> > >
> > > Mrs. Jill Fass
> > >
> > > Hamilton, NJ
> > >
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