[blindkid] Daughter's pre-k graduation

[Carol Castellano]

Hi Doreen,

Yes, it does take time before the powers that be 
begin to listen to the child.  As Debby said, 
when they are young, the system is set up for 
children to take instruction from the adults, and 
not the other way around.  I guess that leads to 
making sure all of the appropriate info is in the 
IEP.  Then if they do not follow what is written 
down, they are in violation of the law.

I wonder, have any of you written it into the IEP 
that the teachers should ask the child if certain 
materials, font size, etc. are working?  If so, 
how old was the child?  Did this work?

Carol

At 07:32 AM 6/6/2010, you wrote:
>Carol I see where you are going ... 
>unfortunately right now, Torrie is not being 
>heard when she self-advocates!!!! I am hoping 
>that in her next school, her teacher will be 
>more aware. It is very discouraging when Torrie 
>indicates she can't see or needs a different 
>color as she can't see yellow on white, or 
>light green on light green, and NO ONE listens 
>to her. Not only are you fatiguing her eyes, 
>but her self-esteem is clearly being eroded! 
>Who is going to build up that self-esteem??? 
>This has happened and been addressed at our 
>March-APril IEP's but again, it reared its head 
>with her TVI on Friday over the font size she is 
>going to use next year in kindergarten (TVI is 
>indicating 24-26 font -- LARGE print!). Torrie 
>was clearly frustrated and several times Friday 
>night, she talked about it and banged on the 
>table to show what she did with the TVI. SHe is 
>frustrated and no one at school is looking at 
>it or hearing it at school! It is all brought 
>home! We will keep fighting the good fight 
>though. And it is thru FOPBC and NFB that we are 
>getting the encouragement and support we need! Â 
>Doreen 
>http://www.raceforindependence.org/goto/TorrieF 
>________________________________ From: Carol 
>Castellano <blindchildren at verizon.net> To: 
>"NFBnet Blind Kid Mailing List, (for parents of 
>blind children)" <blindkid at nfbnet.org> Sent: 
>Sat, June 5, 2010 1:27:10 PM Subject: Re: 
>[blindkid] Daughter's pre-k graduation Doreen, I 
>am sitting here with tears in my eyes, having 
>just read your letter about Torrie and Kim's 
>message about her daughter.  These moments are 
>so meaningful for us, perhaps even more 
>meaningful than those same moments with our 
>sighted children.  So many of us have had to 
>work very hard to help our children develop and 
>to fight the system so that our kids get an 
>equal shake. I hope that the sting of this day 
>subsides quickly.  This experience will become 
>your ammunition for doing things differently 
>next time.  I think we can just about guarantee 
>that people--even those who know our kids and 
>have worked with them--will sell them short on 
>activities like this and will not share our 
>utter PASSION for our kids participating and 
>participating equally and fully.  I'm afraid 
>that the onus will lie on us--and eventually on 
>our kids when they learn to self advocate--to 
>insist on equal participation and then to teach 
>exactly what that means. So though it probably 
>does not feel that way now, this will become a 
>crucial and incredibly valuable learning 
>experience for you.  Unfortunately, we cannot 
>take it for granted that others will do the job 
>right.  I am sure it is difficult to view it in 
>a positive light now--as in, better to find this 
>out in preschool than in high school.  So, now 
>you know.  For other school events, religious 
>rites, scouts, graduations, assume that you'll 
>need to get in there early and teach.  As 
>Torrie grows older, include her in the 
>planning--what do we need to tell these guys so 
>that you can participate just like everyone 
>else?  In this way, you'll be teaching her what 
>to expect and how to advocate for 
>herself.  Things then won't be depressing or 
>sad because she'll be informed and 
>empowered.  Then the day will come when she 
>will be able to anticipate problem areas and do 
>the teaching herself in advance. Again, I hope 
>the sadness dissipates quickly.  Go on to the 
>positive--a valuable lesson learned nice and 
>early that you and Torrie will use well 
>throughout her life. Fondly, Carol Carol 
>Castellano, President National Organization of 
>Parents of Blind Children 973-377-0976 
>carol_castellano at verizon.net www.nopbc.org At 
>02:15 PM 6/4/2010, you wrote: > I wanted to 
>share  a letter that was hand-delivered to 
>our school superintendent today about our 
>daughter's pre-k graduation ceremony. As you can 
>tell from the letter, it was bittersweet. 
>Doreen        I am writing about my 
>daughter who is visually impaired and in the 
>pre-K program at Eagles Nest. Her graduation 
>ceremony was today and I am writing to tell you 
>how upset my family was with the treatment of 
>our daughter, Victorria.   The ceremony 
>started with Victorria being led by Mrs Rowe 
>using sighted guide (I can̢۪t say it was 
>correrrect, but that is not the point). Torrie 
>was set down on the floor to watch the photo 
>review of the year with the rest of her class. 
>Torrie has low vision and she was not able to 
>see or "recognize" the pictures of herself and 
>her friends. I sat and I cried, not because of 
>joy, but because she could not see the pictures. 
>All of the other children were shouting out 
>"that's me" and they even shouted "Torrie," but 
>because Torrie could not see, Torrie could not 
>participate in the festivity that her other 
>friends were enjoying. It was heart breaking as 
>I sat there and continued to watch Torrie not be 
>able to participate like her sighted peers. It 
>made me even sadder, and I continued to cry. I 
>wanted to bring her over to me and go through 
>the pictures verbally with her, but I knew she 
>needed to stay where she is. (I have asked Mrs 
>Rowe for a copy of the CD so that Torrie can 
>watch the show at home).   As the ceremony 
>continued, the children were moved to the stage. 
>Again, Torrie was led by Mrs Rowe to her seat. I 
>looked at Torrie and her cane was no where to be 
>found. I was in shock! In our eyes, it said to 
>us that she "couldn't be herself." During the 
>program, Torrie was then led to a place on the 
>stage to hold a sign while all of the other 
>children were able to walk toward the audience 
>in different parts of the program. We sat there 
>and were so disappointed that our daughter's 
>disability was not recognized, that she was made 
>to "look like all of the other children" yet she 
>was not doing the same activity (walking toward 
>the audience) like her sighted peers. I was 
>livid at this point because Torrie could not be 
>herself, but had to “look like the other 
>sighted childrenâ€ï¿½. ý.  My family was 
>upset and disappointed that Torrie had to be 
>made to be like one of the other kids in the 
>program. Her disability and her cane seemed to 
>be something to be ashamed of. That is not what 
>we are instilling in Torrie. She is to be proud 
>of who she is!   This past weekend, I was at 
>a state convention for people who are blind and 
>visually impaired and everyone used their cane 
>or guide dog. No one was ashamed of having a 
>visual disability. These adults had to navigate 
>a new environment to all of them ­ they had to 
>find their wayy from the hotel check-in, to 
>their rooms, to the restaurant, to the main 
>seminar room and other seminar rooms. Several of 
>these people were also speakers who had to 
>navigate to the front of the room for their 
>speeches. None of these adults were 
>embarrassed  by their canes or guide dogs; 
>instead they navigated around the hotel with 
>confidence and independence. Why isn̢۪t this 
>outlook of independence being supsupported by 
>the school? I don̢۪t even have the words ds to 
>describe my feelings about the independence and 
>assurance these people had last weekend, and how 
>my daughter was not allowed to use her cane 
>which makes her independent and safe! What a 
>stark contrast! There are no words for this! 
>  The diplomas were then given out by Mr 
>Lynch and the children were to shake hands with 
>Mrs Rowe, Mr Lynch and Mrs Serynak. Torrie did 
>not have her cane and she walked across the 
>stage, without her cane. When I saw that, I 
>gasped for my daughter's safety as well as the 
>fact that she did not have her cane to use, 
>which is a vital part of her. Torrie's cane is 
>as much a part of her as her glasses are, just 
>like our glasses are a part of us (we all wear 
>glasses). After the ceremony, Torrie was led off 
>the stage by Mrs Rowe. All of the other children 
>were able to go to their parents and had 
>pictures taken with family and on stage. Torrie 
>looked toward us, but Torrie had Mrs Rowe̢۪s 
>hand. When she looked toward us, I wa was not 
>sure what to do - get her or let her go to her 
>class as were the directions. Instead, all the 
>parents got their children and took pictures, 
>and Torrie had Mrs Rowe's hand and was being led 
>out of the auditorium. My family and I were very 
>disappointed, especially after seeing other 
>families taking pictures. I have no pictures of 
>Torrie alone on stage with her diploma. I have 
>Torrie and her class instead of individual 
>pictures of our graduate. Instead of this being 
>a very happy day, it was heart breaking, 
>depressing and very disconcerting.   Torrie 
>is finally getting orientation and mobility 
>instruction for use in cane. In our last IEP 
>meeting, it was decided that she would not use 
>the cane in her class but she would use it any 
>other time outside of her class. Torrie should 
>have used her cane while in the auditorium 
>instead of the fact that it was being covered 
>up. I don't think it would have mattered to the 
>other parents if Torrie had used her cane (they 
>all know she uses a cane) and it was set on the 
>floor by her. She could have used her cane to 
>move around, just like her sighted peers. 
>Instead, her disability was concealed. Do you 
>know the message being sent to Torrie? That 
>message is that you cannot be you - you need to 
>"hide" your disability and hide your cane. What 
>a sad commentary for our pre-K children! How are 
>we to build her self-esteem with the use of her 
>cane at this point?   I have been trying to 
>be upbeat about the whole ceremony with my 
>daughter, but it has been quite hard to hide my 
>feelings. Torrie told me that "she didn't need 
>her cane on the stage" which is not a 5-yr old's 
>decision. The use of a cane is a decision made 
>by her parents, and it was then reaffirmed by 
>the IEP Team after an IEE on orientation & 
>mobility clearly showed the reasons for the use 
>of the cane. How can we instill that the cane is 
>necessary with her visual disability when the 
>school isn't even on-board for the use of her 
>cane?     Doreen 
>http://www.raceforindependence.org/goto/TorrieF 
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Carol Castellano, President
National Organization of Parents of Blind Children
973-377-0976
carol_castellano at verizon.net
www.nopbc.org