[blindkid] "Individualization"

Tue Jan 27 17:38:16 UTC 2009

Dear Doreen,

It is quite a shock for us to find how much lumping and guessing goes on in
education and special education. It is kind of like finding out how truly
little doctors know when you are really sick. 

That said: They are LEAGLLY BOUND to Special education students with IEP's
IFSP's to individualize. You just have to keep patiently reminding them.

It is always good to start off a meeting by reading the findings and purpose
of the IDEA-Congressional findings-hard to argue with that. And it sets a
good tone. 

(bold text my own)

200U.S.C. 1400 

(c) Findings. Congress finds the following:

(1)    Disability is a natural part of the human experience and in no way
diminishes the right of individuals to participate in or contribute to
society. Improving educational results for children with disabilities is an
essential element of our national policy of ensuring equality of
opportunity, full participation, independent living, and economic
self-sufficiency for individuals with disabilities.

(2)    Before the date of enactment of the Education for All Handicapped
Children Act of 1975 (Public Law 94-142), the educational needs of millions
of children with disabilities were not being fully met because-

(A)    the children did not receive appropriate educational services;

(B)    the children were excluded entirely from the public school system and
from being educated with their peers;

(C)    undiagnosed disabilities prevented the children from having a
successful educational experience;

(D)    a lack of adequate resources within the public school system forced
families to find services outside the public school system.

(3)    Since the enactment and implementation of (Public Law 94-142) this
title has been successful in ensuring children with disabilities and the
families of such children access to a free and appropriate education and in
improving educational results for children with disabilities.

(4)    HOWEVER, the implementation of this title has been IMPEDED by low
expectations, and an insufficient focus on applying replicable research on
proven methods of teaching and learning for children with disabilities.

It continues with a page and a half of great details-look it up yourself and
choose what you may wish to say www.wrightslaw.com
<http://www.wrightslaw.com/> 

(d) Purposes. The purposes of this title are-

(1)

(A) to ensure that all children with disabilities have available to them a
free and appropriate public education that emphasizes special education and
related services designed to MEET THEIR UNIQUE NEEDS AND PREPARE THEM FOR
FURTHER EDUCATION, EMPLOYMENT AND INDEPENDENT LIVING,

(B) to ensure the rights of children with disabilities AND THE PARENTS of
such children are protected;

Look up the requirements of the Individualized Family Service Plan 20 U.S.C.
1436 at www.wrightslaw.com <http://www.wrightslaw.com/>  and the definition
of an Individualized Education Program 1414 (d) and (B) and (3).

The IDEA is not just a good idea-it is THE LAW.

You must repeat these things as necessary and with as little emotion and
bitterness as possible and with as big a smile and honey-sweet gentleness
and business like approach as possible.

You must get the doctors to write anything that can go your way, and do not
share anything with them (the school) that does not go your way. Demand that
their proposals are based on data. Everytime they suggest you ask, "and what
data are you basing that on?" Practice it in front of the mirror. Ask for
data/studies in writing if you really disagree. Find your own data (yes it
is hard as there is so little research for us) to counter or propose. Ruby
Ryles has internationally recognized data. Go to our website and put Ruby
Ryles in the search engine. Use Joe Cutter's books and Carol Castellano's
for best practice data.

You say, "Torrie is just like all the other kids except she has significant
trouble seeing. Other kids have something unique about them too. This is
about Torrie though. And I can guarantee you she will want to read just like
the other kids, meaning just as fast and just as fluently and just as
enjoyably without fatigue. She will not be able to read like she has a right
to with print. I mean how can you dare to even say she won't like Braille?
Will you tell me I shouldn't try and have her eat broccoli because she won't
like it? Is that what you think, there is a negativity to Braille like
broccoli and we are going to have to force it on her? Where does that idea
come from? I am beginning to meet lots of people who love their Braille
because it frees them to read fluidly without fatigue. Yes, if you or anyone
teaching her has the attitude 'oh poor Torrie has to learn Braille or use a
cane' I think she will have a negative attitude. Come to think of it, isn't
there a semi-truck load of scientific data on the attitudes of the
instructor affecting student performance?..." And of course there are reams
of data for all students on the windows of learning such things when young.
It is a tool for her box, you get her proficient at it and by fourth grade
or so she will know herself if she needs it or not, and it is always better
for those who go back to riding a bike or skating after not doing so for
awhile than learning to ride for the first time in your twenties or
thirties.

With the acuity she is measuring you can be pretty certain you will have
this battle for awhile. So, prepare, dig in, have respite, get the proper
ammunition and battle plans, and use high ranking officers whenever you can
get them. You have had contact with your NFB and state NOPBC I know-stay
with them, trust them.

Best, 

Carrie Gilmer, President

National Organization of Parents of Blind Children

A Division of the National Federation of the Blind

NFB National Center: 410-659-9314

Home Phone: 763-784-8590

carrie.gilmer at gmail.com

www.nfb.org/nopbc

-----Original Message-----
From: blindkid-bounces at nfbnet.org [mailto:blindkid-bounces at nfbnet.org] On
Behalf Of Doreen Franklin
Sent: Monday, January 26, 2009 6:16 PM
To: NFB/Blindkid; NFB/List
Subject: [blindkid] "individualization" help needed

I have been reading some of the emails on IEP's - being INDIVIDUALIZED for
your child. I have some questions that need to be addressed so that my
school district will THINK of my daughter as an individual instead of
"lumping" her in with peers based on her acuity, and then "guessing" as to
what she will like or will not like. I do have an advocate from Coalition
for Indep Living at our meetings - FYI.

Some background .... Torrie (now 4 yrs old) was born in Guatemala with
congenital cataracts; they were taken out at about 4-1/2-mos old and false
lenses were implanted in both eyes. We take her to Bascom Palmer in Miami
and she also has nystagmus, strabismus/esotropia, myopia and photophobia
(light sensitivity). I have been emphatic that the school bd puts down light
sensitivity after the photophobia so as not to literally translate it as
FEAR of light; I can't say they have been happy with even that. They don't
necessarily always even acknowledge that there will be problems with glare
for her. With her birthday, she has an extra year - so I am signing her up
for voluntary pre-k in August (unsure if we will send her there or home
school her).

We have had uphill battles with our school bd/IEP team. They seem to forget
we are part of that team. But the TVI and TVI/O&M are the main impetus and
our ESE director seems to "trust" what they say over what hubby and I are
saying (I don't believe he has any vision training at all). We have asked
for print & Braille and that is a battle we are gearing up for as they are
saying "she has too much sight (20/70-80 near best corrected), she WILL NOT
LIKE IT, it WILL BE TOO SLOW for her." Bascom Palmer Doc is not necessarily
on board for Braille - he is saying only 30% of kids need Braille; he did
refer us to the low vision specialist - but Torrie is only 4!

School bd does not believe she needs a cane -- although she hits/bangs into
things all the time. (There may be some spatial awareness things also going
on which just seems to increase the need for a cane.) Their "excuse" is that
she is doing "NORMAL" 4-yr old bumping. Funny, I don't remember our older
daughter bumping into things, and when I check with other moms of 4-yr olds,
their kids aren't bumping into things. I am keeping a log of when she is
bumping into things with lots of details (FL School for the Deaf & Blind
have been a HUGE help and they are doing a functional eval next month).
Because her bumping into things was not "reproducable" in front of them or
FSDB for their O&M eval, they are discrediting anything we are telling them!

We went to a different pediatric optometrist last week; I was trying to get
more answers than what I am getting from Bascom Palmer. She said with
strabismus, Torrie will not have depth perception - which is what I have
been trying to tell the school bd is the reason she is bumping into things.
It is falling on DEAF ears!  

I had to stop & think what she just said about depth perception & strabismus
... and then I asked shouldn't the TVI know that????? She said it depended
on their background/ schooling. So my next question is - if you have a child
whose condition you are unsure of, and her mom is continuing to say that
there is no depth perception, wouldn't you be checking it out????? with
other TVI's, the web, your school, other professionals?????? 

Doc did then say that Torrie has "Functional" depth perception but does not
have "fine" depth perception. Doesn't that further indicate a need for a
cane? 

Doc answered my question about the difference in lay man's terms of
strabismus vs amblyopia (I've seen amblyopia at Bascom Palmers file), about
depth perception, and why they would put in a false lens from a medical
standpoint. We've only "guessed" before, mainly from an adoptive standpoint.

I have not done much research on strabismus and depth perception at this
point. My next question is .... where and how do I get "layman's" medical
info ACTUALLY PASSED ON to the ESE director (somehow passed by the TVI and
TVI/O&M) on strabismus & depth perception so that he can "understand" what
is going on in her eyes instead of "relying" on his staff as they are
underinformed, don't care, want to continue to "lump" her in with the masses
.... I continue to hear from the TVI that "Torrie will want to be just like
the other kids, she won't want Braille or a cane, she'll want to be like all
the other kids, she won't want that ...." And then I try to figure out how
she will LIKE a magnifier or monocular (as they are suggesting toward
2nd-3rd grade when print shrinks) ... won't she want to be like "everyone
else" according to their "theory" and they certainly will not be using a
magnifier/monocular! How do I say to them she is an individual and that

 they need to consider ALL of her diagnoses instead of just the visual
acuity at this point? The school bd will consider other options once her
vision starts to fail (we have to watch for glaucoma or retinal detachment.)
There is also glare, eye fatigue, clutter on the page, spacing, print size &
font etc ....  those things really haven't even been addressed!

Another "stupid" question .... we are on "consult only" - LONG story and we
are in disagreement with this (cut from 30 min/mo of direct service). But
TVI is supposed to "consult" with OT (which she did this month) and parent.
I have not even HEARD from the TVI either by email or phone (actually at all
this year since August) as to see how Torrie is doing. She has been taken
out of Head Start since the end of Nov and I have not had a call/email, let
alone a "consult." We were scheduled for Dec 18 and TVI got sick. I would
have thought she would have made a point to consult with me the first week
the kids were back in school but .... she did a consult with the OT about
Torrie pulling everything directly up to her face (is it a visual problem or
a trunk/OT problem). I cannot imagine it would have lasted the full 30
minutes/month I have for service. And then the OT & TVI did a three-way call
to me as I was supposed to be at the meeting with the 2 of them

 (that lasted all of maybe 5 minutes). How do I get the TVI to do her job
and actually CONSULT with me -- do I email the ESE director and create more
waves? TVI does not like us as we are not in agreement with them on their
goals -- they are just that, THEIR goals, without consideration of what we
are looking at for our daughter.

We have an IEP meeting (it will be our 5th for this year since May)
scheduled for Feb 23 because the director wants to talk about "how services
are given" is what I am getting for a reason. I personally think he wants to
pull our services, but that is only my gut thinking.

I am trying to get things straight in my head having to deal with people who
don't seem to care much for each INDIVIDUAL child! How do I get this across
to the ESE director who is already dealing with problems in our county (St
Lucie Co, FL where the kindergarten teacher had her students vote out one of
the other students!). I need to have his direct attention and I can't even
get a confirmation of the Feb 23rd date! We are going to the state NFB
conference in May. 

Any help is appreciated in trying to get the school bd to remember she is an
individual not to be lumped in with "other children & what they SHOULD be
seeing at 20/70 acuity" as well as how to get to the ESE director for his
actual help!

Doreen

www.allforhim.acnrep.com/e_index.asp?CO_LA=US_EN&BW=

www.ourgreatadventuresbydoreen.blogspot.com

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