Guest guest Posted June 10, 1999 Report Share Posted June 10, 1999 Hi everyone and anyone who can help. Today has been a very depressing day. My DB consultant called to say that the school district will probally have a pretty good chance standing their ground in their unwillingness to provide my daughter Emma with an intervener because her hearing is so good . mild loss in one ear and mod in the other. I agree that she has multisensory losses and that she should still be considered DB because she does not have the ability to use her senses together. I understand the difference between the intervener and interpreter but I am really running out of energy to get these people to listen to me. On the advice of the DB people who are working with me, I am getting yet another audio to asses her " functional hearing " . My school district is so tough, I am not sure if even that will help but I continue to go through all the motions. My mil has been searching for a " legal " definition of DB and we are also wondering if there is any written resources on hearing processing. Her BAER test showed sensineural loss. Does this mean that what is getting in isn't being processed, meaning she doesn't understand the words she can hear? Is there any written literature to back this up? Thank you Ann and for your help and anyone else who can offer any info. I am always looking for help and accepting of everyone's advice. I have PILES of papers all over my house on Charge related materials as I am sure everyone else has, but am always looking for more. Where can I find an article with scientific backup on the high cognition of these " unteachable " kids whose test scores are consistantly low? Jen Katapodis wife to Mike and mom to my CHaRgErs Emma(51/2) and Diane (almost 4) Sally, Great reading tips. I am going to try it as we read the same books over, and over and over...... Cheryl, Congrats on your IEP!!! Jen K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Coming out of the shadows I noted a call for a definition of Deaf Blindness...I don't know if the Texas version will help, but this was sent out to our Vision people for a census of the number of deaf blind children in the educational system. There is also a reference to the IDEA definition of deaf blindness on another page... This is from the Texas school for the blind and Visually Impaired Website: http://www.tsbvi.edu/Outreach/seehear/spring97/checklist.htm another page that may help is: http://www.tsbvi.edu/Outreach/seehear/spring97/deafblind.htm I am cutting one paragraph out of this one that may help you as you look for more info: >Sometimes parents don't understand why their child is on the Texas Deafblind Census when they are not coded auditorily impaired or visually impaired for state purposes. The reason this might occur is because the Federal definition for deafblindness recognizes that even mild vision and hearing losses in combination are significant in the child's educational progress. Programs for the child with primarily visual impairments or deafness have eligibility based on more significant vision and hearing loss. Typically the children who have more minor, singular sensory losses will not need the type of specialized programming provided by a vision teacher or a teacher of the deaf and hearing impaired. > > I hope this helps you get the intervention you need! At 01:22 PM 6/10/1999 EDT, you wrote: >From: Jandmkat@... > >Hi everyone and anyone who can help. Today has been a very depressing day. My >DB consultant called to say that the school district will probally have a >pretty good chance standing their ground in their unwillingness to provide my >daughter Emma with an intervener because her hearing is so good . mild loss >in one ear and mod in the other. I agree that she has multisensory losses and >that she should still be considered DB because she does not have the ability >to use her senses together. I understand the difference between the >intervener and interpreter but I am really running out of energy to get these >people to listen to me. On the advice of the DB people who are working with >me, I am getting yet another audio to asses her " functional hearing " . My >school district is so tough, I am not sure if even that will help but I >continue to go through all the motions. My mil has been searching for a > " legal " definition of DB and we are also wondering if there is any written >resources on hearing processing. Her BAER test showed sensineural loss. Does >this mean that what is getting in isn't being processed, meaning she doesn't >understand the words she can hear? Is there any written literature to back >this up? Bob Corpus Christi, TX jamesgang@... http://start.at/jamesgang " The Satellite Dish is the State Flower of South Texas " (as quoted by Doug , Pastor Second Baptist Church, Corpus Christi, TX) Get paid to surf the web! http://alladvantage.com/go.asp?refid=AOL803 ICQ # 13500081 AIM Bob3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Jen- You probably already know about this but just on the off chance that you don't I will tell you about it. I found the DB-Link web page (The National Information Clearinghouse on Children Who Are Deaf-Blind) Their address is dblink@... or http://www.tr.wou.edu/dblink. Phone # 1 800 438-9376. I hesitate to say too much because I am so new to this so somebody please correct me if I am wrong. Anyways I just got a packet of info in the mail from them today (it took less than a week to get here) and have only read about two pages so far but I thought about you as I read it. The one I am reading is the Overview on Deaf-Blindness by Barbara Miles, M.Ed. I think you may find it beneficial. I just wanted to include a few quotes just so you would get some idea of what it is about so sorry if this gets lengthy. " Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches in order to ensure that children with this disaility have the opportunity to reach their full potential. " " For the young child who is deaf-blind, the world is initally much narrower. " " Many children called deaf-blind have ....sufficient hearing to recognize familiar sounds, understand some speech, or develop speech themselves. The range of sensory impairments included in the term " deaf-blindness " is great. " This is where the legal definition of deaf-blindness would really come in handy. I remember seeing it on a website ( you may have to do a little searching). Listed under major causes of Deaf-Blindnss is CHARGE syndrome. As I said early even if Josh had only had a mild hearing loss I believe he still would have received the intervenor services here in our state. And if she is considered deaf blind then they should be willing to make speacial arrangements for her. Another quote from the above mentioned article: " The disability of deaf-blindness places unique demands upon families, teachers, and caregivers, who must make sure that the person who is deaf-blind has access to the world beyond the limited reach of his or her eyes, ears, and fingertips. The people in the environment of children or adults who are deaf-blind must seek to include them--moment-by-moment--in the flow of life and in the physical environments that surround them. If they do not, the child will be isolated and will not have the opportunity to grow and to learn. If they do,the child will be afforded the opportunity to develop to his or her fullest potential. " I really believe that an intervenor is the key to 's success. His whole world is mainly touch and to have somebody there with him helping him to understand what is going on is so important! I think these kids really do need one on one learning because for if he is not being touched he is alone. (We don't know what his vision is yet but he does have some/ he has severe to profound hearing loss) It's probably a good thing that I only read two pages or this would be a lot longer. They have a section on individualized education but I havn't read it yet. Anyways, if you already have this info then I'm sorry for going on so long. But I really feel strongly about the importance of having an intervenor so don't give up. It sounds like mabye your school district needs to do a little more research on deaf-blindness before they decide anything. Let me know if there is any thing else I can do to help you. I am interested in hearing about what they decide. mom to (4 mo) CHaRGE and (2 yrs) Jandmkat@... wrote: > From: Jandmkat@... > > Hi everyone and anyone who can help. Today has been a very depressing day. My > DB consultant called to say that the school district will probally have a > pretty good chance standing their ground in their unwillingness to provide my > daughter Emma with an intervener because her hearing is so good . mild loss > in one ear and mod in the other. I agree that she has multisensory losses and > that she should still be considered DB because she does not have the ability > to use her senses together. I understand the difference between the > intervener and interpreter but I am really running out of energy to get these > people to listen to me. On the advice of the DB people who are working with > me, I am getting yet another audio to asses her " functional hearing " . My > school district is so tough, I am not sure if even that will help but I > continue to go through all the motions. My mil has been searching for a > " legal " definition of DB and we are also wondering if there is any written > resources on hearing processing. Her BAER test showed sensineural loss. Does > this mean that what is getting in isn't being processed, meaning she doesn't > understand the words she can hear? Is there any written literature to back > this up? > Thank you Ann and for your help and anyone else who can offer any info. > I am always looking for help and accepting of everyone's advice. I have PILES > of papers all over my house on Charge related materials as I am sure everyone > else has, but am always looking for more. > Where can I find an article with scientific backup on the high cognition of > these " unteachable " kids whose test scores are consistantly low? > Jen Katapodis > wife to Mike and mom to my CHaRgErs Emma(51/2) and Diane (almost 4) > > Sally, > Great reading tips. I am going to try it as we read the same books over, and > over and over...... > > Cheryl, > Congrats on your IEP!!! > Jen K > > ------------------------------------------------------------------------ > ONElist: where real people with real interests get connected. > http://www.onelist.com > Join a new list today! > ------------------------------------------------------------------------ > 4th International CHARGE Syndrome Conference, Houston, Texas, July > 23-25, 1999. > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Betsy wrote: This is Betsy McGinnity from DB-LINK. I sent Jen three short bibliographies related to assessment, functional hearing and auditory processing. If anyone else is interested in receiving them, please send me your e-mail address. Thanks. Hi Betsy! Could you please send this to the list. I'm think that most of us could benefit from this information now or in the future! Thanks! Cheryl, , (5), (3, CHaRGE) MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hi All, This is Betsy McGinnity from DB-LINK. I sent Jen three short bibliographies related to assessment, functional hearing and auditory processing. If anyone else is interested in receiving them, please send me your e-mail address. Thanks. - Thanks for mentioning us! Betsy Betsy L. McGinnity Information Specialist Perkins DB-LINK mcginnityb@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 1999 Report Share Posted June 11, 1999 Hi Betsy, Just want to make sure we have these materials in CDBS library so please send the list! Jackie Kenley cdbsjk@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 1999 Report Share Posted June 12, 1999 I want to thank everyone who has sent me information and support. I wanted to address everyone seperately as you have all been so helpful. Only in " chargeland " could I send out a plea for help and recieve tons of it in less than 12 hours. I am so disorganized lately that I can barely get my act together but am slowly sifting through all my new knowledge :-). I really feel secure now to go back and get my daughter what she needs and deserves. I hate to mention names for fear that i may forget someone but know that you have been equally important. Thank you to Kris, , Casey Tim/, Jackie, , Marilyn, Bob , Sally,Vickie and . And I am sure a multitude of others. , I can't believe how you seem to really have your act together so early in the game. Don't ever feel funny about giving advice. It only takes a few days of living with a Charger to be an expert. Your son sounds like he is getting off to a great start because of you. Keep up the good work! Thanks again and i will keep you all posted! Jen Katapodis wife to mike and mom to our CHaRgErs Emma(51/2) and Diane (almost 4) Quote Link to comment Share on other sites More sharing options...
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