[blindkid] "individualization" help needed

Tue Jan 27 12:33:29 UTC 2009

It seems to me that you have strong feelings about your child's needs.  I 
know how frustrating it is to to feel like the school is fighting you when 
all you want is to get a meaningful education for your child.  My son is in 
6th grade and we've been through many, many hours of meetings with school 
officials.  Our last IEP meeting was 18 hours long over 3 days.  The most 
effective thing we did to make progress in the IEP process was bring an 
advocate who knew the law and would stand up to the rest of the IEP 
committee.  We had help from other experts who helped the committee 
understand the issues of blindness but it was our paid advocate who actually 
got the paperwork straightened out.  That said, I think they were willing to 
straighten out the paperwork because we had spent years documenting our 
child's needs.  I've come to think that a large part of the problem in 
educating kids with special needs is that the professionals whose job it is 
to educate them don't really know how to do the job but many of them are not 
willing to admit it.  They want to be treated like the authority on the 
issues of education and are not willing to listen to people they consider 
"non-experts"--parents. Since we know our kids way better than most of the 
teachers, this is a huge frustration.

I believe that you are going to need to get experts to document your child's 
eye condition in a way that will qualify her for services.  They don't have 
to believe in the need for the services.  I haven't found any eye care 
professionals who are compassionate about the life of a blind person.  It 
seems their concerns begin and stop with the mechanics of vision.  They 
should, however be able to document things like "problems with glare effects 
child's ability to move safely in bright locations" or something like 
that--whatever it is you need to get a cane in your child's hand.  You may 
need to have her evaluated by professional people outside the school 
district.  If she qualifies for services as a child with a vision 
impairment, the IEP committee must consider braille.  A degenerative eye 
condition would be more ammunition for starting braille now.  It seems to me 
that the reason many schools don't want to instruct in braille is because it 
is WAY more trouble for them.  Believe me, if your child is a braille 
reader, you've got a big struggle on your hands getting instruction and 
materials in a timely manner. But braille is great for kids with low vision. 
It is less stress on the eyes and can be way faster than reading large 
quantities of large print.

So, in summary, I think you need to line up a cadre of professionals on your 
side and you need to find your way to someone in the school district who has 
some power and believes in you.  We were able to convince the director of 
special education that we knew what we were talking about.  She wasn't 100% 
on our side but when it was clear that we were not going to quit fighting 
and we knew what we were talking about, some things changes.  The hardest 
part for us is trying to be friendly and diplomatic when we thing the 
district is screwing up.  I'm always fascinated by those people who are able 
to be diplomatic in times of stress.

Many people on this listserv will tell you that this is a struggle that will 
continue throughout your child's life.  You need to be a strong advocate and 
you need to teach your child to advocate for herself.  Despite it all, we 
have great success stories.  Keep up the good work.

Sally Thomas
----- Original Message ----- 
From: "Doreen Franklin" <theconelady at yahoo.com>
To: "NFB/Blindkid" <blindkid at nfbnet.org>; "NFB/List" <nfbf-l at nfbnet.org>
Sent: Monday, January 26, 2009 6:16 PM
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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