[blindkid] "individualization" help needed

Tue Jan 27 17:00:43 UTC 2009

I'll second Sally's advice.  One clarification, though:  in the case 
of a visually impaired child the school district must do more than 
just CONSIDER braille--they must PROVIDE braille unless an evaluation 
proves that the child does not need it now and won't need it in the 
future.  The law clearly would be on your side.  Have you tried 
quoting it to them yet?  If your child is the first in their school 
system, there is a good chance that they are unfamiliar with the 
braille provision of the IDEA.  Let us know if you need the wording 
and citation.

Another thought--is there a full and fair evaluation of your child in 
all relevant areas?  The eval is supposed to give a picture of the 
child's strengths and needs.  From the needs should come the IEP 
goals and objectives.  From the goals and objectives, the program 
should be created, including all the tools and techniques needed for 
your child's full, independent participation.

My guess is that with all their arguing that Torrie does not need any 
of these tools, they still are not expecting her to perform at 
age/grade level on all tasks.  If this is the case, then they need 
some education about expectations for blind/VI students.  Without an 
appropriately high bar, chances are your daughter will not fulfill 
her full potential.  Likewise, without the tools and skills 
necessary, she will be kept from achieving at her best.  There are 
some stories about high achieving blind persons on 
www.blindchildren.org, the website of POBC-NJ.  Perhaps you could 
share them with school staff.

Another thought is to create a specific goal of independence on her 
IEP, appropriate to her class, and which would contain all the tools 
and techniques necessary to help her get there.  There is much more 
about this in Making It Work, available from www.nfb.org.

Good luck!

Carol

At 07:33 AM 1/27/2009, you wrote:
>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
>
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>
>
>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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