[blindkid] "individualization" help needed

Tue Jan 27 11:06:10 UTC 2009

I have no advice to give since my daughter is only going to be three and hasn't started the process yet.  I just wanted to write to say holy cow I'm sorry you are going through all that!
Kathy

________________________________
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 7:16:05 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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