[blindkid] Independant LMA in NJ area

Wed Feb 18 19:44:54 UTC 2009

Holly,

I think I need to vent a little bit here even though it's the same song and story.

This makes my stomach churn.  The more I network with families with children with albinism, the more I am realizing this is a bigger problem than suspected.  My kids (with albinism) are considered one of the "lucky ones".   Their primary mode of reading is indeed print, but have had Braille goals on their IEP since their induction into preschool.  It's never been a "fight" to get it onto their IEP but we have had to advocate for quality services and holding them to high expectations.  (Note:  Even though you may have Braille goals..1-2x a week just doesnt' cut it.  4x a week for 30 minutes takes a lot of parent involvement).

What was the result of the LMA in the area of fatigue, posture, writing (reading his own handwriting), and oral presentation?   These are some of the "obvious" factors that seem evident in most children I have networked locally.  I have taken unstaged pictures and video of my children in a home setting (homwork, leisure reading, church) and school setting (Reading, Math, Class Presentation, Recess) to prove this point.  If your child's eyes are watering after 20 minutes of reading or they need to take a break..document it.  If your child complains of headaches then document.  If your child has to hold a piece of paper to their nose to read when giving a presentation in class, then document.   I can send you copies of my pictures if it will help to give you some ideas?  (email me off list).

I know time is of the essence here, and that is what is ridiculous.  The system sure knows how to drain parents of their time and energy so they will hopefully backdown.  Hang in there, even when it seems like you are chasing your own tail.

Marla PalmerPresident, Utah Parents of Blind Children (UPBC)1062 E. 
Fairway DriveNorth Salt Lake, Utah  84054801-797-9760www.upobc.blogspot.com“The 
greatest danger for most of us lies in not setting our aim too high and falling 
short, but in setting our aim too low, and achieving our mark.”   
**Michelangelo

> From: carrie.gilmer at gmail.com
> To: blindkid at nfbnet.org
> Date: Wed, 18 Feb 2009 11:41:32 -0600
> Subject: Re: [blindkid] Independant LMA in NJ area
> 
> Holly,
> I have written you privately.
> 
>  
>  
> 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 holly miller
> Sent: Wednesday, February 18, 2009 10:39 AM
> To: blindkid at nfbnet.org
> Subject: [blindkid] Independant LMA in NJ area
> 
> Hi!
> I'm fairly new to the list.  I have an 8 yr old son w/ Albinism who we
> adopted from China in July 2006.  We've been chipping away at the vision
> issues as well as the learning English & adjusting to family life.  As
> typical w/ Albinism, he is legally blind (20/200 best corrected, between
> 20/300 & 20/400 uncorrected) & has nystagmus.
> 
> Long story short, his IEP is woefully lacking vision accommodations and
> doesn't include braille.  I have been pushing since October to get braille
> added.  Yes, I know the IDEA, I have shown them what the IDEA says.  The
> school is rebounding my requests onto the CoB.  Our CoB rep is clearly
> anti-braille and very slow to follow through on promised services/equipment.
> I have a meeting this afternoon with my son's school case worker, the
> director of our special svcs department and the CoB rep.  His IEP review is
> scheduled for 3/3, this is kind of a pre-IEP meeting meeting LOL!  A few
> mintures ago I finally received a faxed copy of the LMA she's been working
> on since October.  The whole report is very vague (I have the PA
> LMA<http://www.e-advisor.us/workshop/tmaggiorePPT/PFFVLMA.pdf>printed
> as a comparison) and of course, she's not recomending Braille.
> I have no faith in the objectivity or accuracy of her LMA.  I want to ask
> the school to send us for an independant LMA (or get one on our own if
> necessary)  Does anyone have recomendations in the NJ/NYC/Philly area?
> We've been to the PA College of Optometry for a Low Vision evaluation, the
> dr there recomended someone by the name of Missy Garber.  I haven't
> contacted her yet, I wanted to gather any other recomendations first.
> 
> I know this afternoon's meeting will be spent with the sp-ed staff trying to
> convince me Hank doesn't need braille.  Aside from repeating the IDEA
> passage and employment stats for non-braille users, any other snappy
> comebacks would be appreciated!!!
> 
> Thanks!
> Holly
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for
> blindkid:
> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/carrie.gilmer%40gm
> ail.com
> 
> 
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://www.nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for blindkid:
> http://www.nfbnet.org/mailman/options/blindkid_nfbnet.org/palmermommy%40q.com