Does anyone have experience with a child with Batten disease? Is there any chance the vision loss may act sort of like CVI in reverse? For example, at one point the child might attend with background complexity or to items with several colors, but eventually would need a more scripted environment or single color item, etc. I'd imagine it's different for each child, of course, but was just sort of looking for some principles to work with. Thanks, Shelley Mack

Hi Shelley, I have lots of experience with Batten Disease. The vision loss due to Batten Disease does not act like CVI at all. It is purely loss in central acuity, first. What type of Batten Disease does this child have? Please contact the Batten Disease and Support Association-*Becky Hetteberg, MA, MSW, LISW-S – Director of Family Support and Education* Toll-Free: (800) 448-4570, ext. 12; Direct: (614) 973-6012; Email: bhetteberg@bdsra.org. She should have a video and a pamphlet that would be helpful to the entire staff to understand how to help this child. Also, feel free to contact me directly with any other questions you might have. Lisa Faret (faretlisa@gmail.com) On Sat, Sep 17, 2016 at 9:55 AM, Shelley Mack <smackbrl@gmail.com> wrote: > Does anyone have experience with a child with Batten disease? Is there any > chance the vision loss may act sort of like CVI in reverse? For example, at > one point the child might attend with background complexity or to items > with several colors, but eventually would need a more scripted environment > or single color item, etc. I'd imagine it's different for each child, of > course, but was just sort of looking for some principles to work with. > > Thanks, > Shelley Mack > > You are subscribed to AERNet, The Association for Education and > Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to > aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/ > mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to > unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > >

I also have students with Batten Disease and have accumulated some information over the years that I would be glad to share with you. Email me off list with your contact information. Nancy Ozinga Kent ISD, TCVI nancyozinga@kentisd.org Sent from my iPhone > On Sep 17, 2016, at 9:56 AM, Shelley Mack <smackbrl@gmail.com> wrote: > > Does anyone have experience with a child with Batten disease? Is there any chance the vision loss may act sort of like CVI in reverse? For example, at one point the child might attend with background complexity or to items with several colors, but eventually would need a more scripted environment or single color item, etc. I'd imagine it's different for each child, of course, but was just sort of looking for some principles to work with. > > Thanks, > Shelley Mack > You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org

Same for me, I have worked with two sisters diagnosed with Batten for the past 14 years. I too am willing to chat via phone but what I would like to share with the list is that you are in a battle to maintain skills, especially functional skills, as the disease progresses-both in context of the visual impairment but also the neurological degeneration. Our teams have work diligently to maintain communication and preserve better speech for augmentative communication. The involvement/consultation of a mobility specialist is paramount for as long as the student is mobile, self-directing movement. Finally, the family whom I've worked with speak very highly of the association and family connections at the national level-they absolutely love attending the yearly conference/training and always bring the team back ideas and encouragement. Kevin Kevin J. Hollinger COMS, M.A., M.Ed, NBCT FHSD Vision Program 636-851-6143 > On Sep 17, 2016, at 12:31 PM, Nancy Ozinga <NancyOzinga@kentisd.org> wrote: > > I also have students with Batten Disease and have accumulated some information over the years that I would be glad to share with you. Email me off list with your contact information. > Nancy Ozinga > Kent ISD, TCVI > nancyozinga@kentisd.org > > Sent from my iPhone > >> On Sep 17, 2016, at 9:56 AM, Shelley Mack <smackbrl@gmail.com> wrote: >> >> Does anyone have experience with a child with Batten disease? Is there any chance the vision loss may act sort of like CVI in reverse? For example, at one point the child might attend with background complexity or to items with several colors, but eventually would need a more scripted environment or single color item, etc. I'd imagine it's different for each child, of course, but was just sort of looking for some principles to work with. >> >> Thanks, >> Shelley Mack >> You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. >> >> To post a message to all the list members, send an email to aernet@lists.aerbvi.org. >> >> Address list requests to: aernet-request@lists.aerbvi.org >> >> To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. >> _______________________________________________ >> AERNet mailing list >> AERNet@lists.aerbvi.org >> http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org

The typical VI goals (striving for independence) are not applicable. Instead, the goal is to teach the student (and other teachers and caregivers) a modified skill set that's reconsidered and ratcheted down as the disease progresses, making everyone aware of, and comfortable with, increasing dependence. At every step along the way, it's important to provide intellectual, physical, and social stimulation at a level/intensity appropriate for the ever-changing, downward spiral the student will experience. This is a hideous disease; I'm so sorry for your student, his or her family, and the school personnel who will be helping them on this journey. Jodi > On Sep 17, 2016, at 12:46 PM, HOLLINGER, KEVIN <Kevin.Hollinger@fhsdschools.org> wrote: > > Same for me, I have worked with two sisters diagnosed with Batten for the past 14 years. > I too am willing to chat via phone but what I would like to share with the list is that you are in a battle to maintain skills, especially functional skills, as the disease progresses-both in context of the visual impairment but also the neurological degeneration. > Our teams have work diligently to maintain communication and preserve better speech for augmentative communication. The involvement/consultation of a mobility specialist is paramount for as long as the student is mobile, self-directing movement. > Finally, the family whom I've worked with speak very highly of the association and family connections at the national level-they absolutely love attending the yearly conference/training and always bring the team back ideas and encouragement. > Kevin > > > Kevin J. Hollinger > COMS, M.A., M.Ed, NBCT > FHSD Vision Program > 636-851-6143 > > >> On Sep 17, 2016, at 12:31 PM, Nancy Ozinga <NancyOzinga@kentisd.org> wrote: >> >> I also have students with Batten Disease and have accumulated some information over the years that I would be glad to share with you. Email me off list with your contact information. >> Nancy Ozinga >> Kent ISD, TCVI >> nancyozinga@kentisd.org >> >> Sent from my iPhone >> >>> On Sep 17, 2016, at 9:56 AM, Shelley Mack <smackbrl@gmail.com> wrote: >>> >>> Does anyone have experience with a child with Batten disease? Is there any chance the vision loss may act sort of like CVI in reverse? For example, at one point the child might attend with background complexity or to items with several colors, but eventually would need a more scripted environment or single color item, etc. I'd imagine it's different for each child, of course, but was just sort of looking for some principles to work with. >>> >>> Thanks, >>> Shelley Mack >>> You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. >>> >>> To post a message to all the list members, send an email to aernet@lists.aerbvi.org. >>> >>> Address list requests to: aernet-request@lists.aerbvi.org >>> >>> To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. >>> _______________________________________________ >>> AERNet mailing list >>> AERNet@lists.aerbvi.org >>> http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org >> >> You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. >> >> To post a message to all the list members, send an email to aernet@lists.aerbvi.org. >> >> Address list requests to: aernet-request@lists.aerbvi.org >> >> To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. >> _______________________________________________ >> AERNet mailing list >> AERNet@lists.aerbvi.org >> http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org

Hi Shelley, Our team has focused on maintaining skills the student learned for a long as he would tolerate and then readjust accordingly as the disease progresses. We found the information in the link below quite helpful. http://bdsra.org/wp-content/uploads/2012/01/Teach-Be-Taught-4th-Ed.-updated-11.07.12.pdf Amy O'Brien, MS-ED; TVI, VRT Adjunct Professor at Dominican College Special Education Teacher Teacher of the Visually Impaired Vision Rehabilitation Teacher LEGAL NOTICE: This e-mail transmission, with accompanying records, is intended only for the use of the individual or entity to which it is addressed and may contain confidential and/or privileged information belonging to the sender, including individually identifiable health information subject to the privacy and security provisions of HIPPA. This information may be protected by pertinent privilege(s), e.g., attorney-client, doctor-patient, HIPPA, etc., which will be enforced to the fullest extent of the law. If you are not the intended recipient, you are hereby notified that any examination, analysis, disclosure, copying, dissemination, distribution, sharing, or use of the information in this transmission is strictly prohibited. If you have received this message and associated documents in error, please notify the sender immediately for instructions. If this message was received by e-mail, please delete the original message. > On Sep 17, 2016, at 1:44 PM, HOLLINGER, KEVIN <Kevin.Hollinger@fhsdschools.org> wrote: > > Same for me, I have worked with two sisters diagnosed with Batten for the past 14 years. > I too am willing to chat via phone but what I would like to share with the list is that you are in a battle to maintain skills, especially functional skills, as the disease progresses-both in context of the visual impairment but also the neurological degeneration. > Our teams have work diligently to maintain communication and preserve better speech for augmentative communication. The involvement/consultation of a mobility specialist is paramount for as long as the student is mobile, self-directing movement. > Finally, the family whom I've worked with speak very highly of the association and family connections at the national level-they absolutely love attending the yearly conference/training and always bring the team back ideas and encouragement. > Kevin > > > Kevin J. Hollinger > COMS, M.A., M.Ed, NBCT > FHSD Vision Program > 636-851-6143 > > >> On Sep 17, 2016, at 12:31 PM, Nancy Ozinga <NancyOzinga@kentisd.org> wrote: >> >> I also have students with Batten Disease and have accumulated some information over the years that I would be glad to share with you. Email me off list with your contact information. >> Nancy Ozinga >> Kent ISD, TCVI >> nancyozinga@kentisd.org >> >> Sent from my iPhone >> >>> On Sep 17, 2016, at 9:56 AM, Shelley Mack <smackbrl@gmail.com> wrote: >>> >>> Does anyone have experience with a child with Batten disease? Is there any chance the vision loss may act sort of like CVI in reverse? For example, at one point the child might attend with background complexity or to items with several colors, but eventually would need a more scripted environment or single color item, etc. I'd imagine it's different for each child, of course, but was just sort of looking for some principles to work with. >>> >>> Thanks, >>> Shelley Mack >>> You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. >>> >>> To post a message to all the list members, send an email to aernet@lists.aerbvi.org. >>> >>> Address list requests to: aernet-request@lists.aerbvi.org >>> >>> To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. >>> _______________________________________________ >>> AERNet mailing list >>> AERNet@lists.aerbvi.org >>> http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org >> >> You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. >> >> To post a message to all the list members, send an email to aernet@lists.aerbvi.org. >> >> Address list requests to: aernet-request@lists.aerbvi.org >> >> To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. >> _______________________________________________ >> AERNet mailing list >> AERNet@lists.aerbvi.org >> http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > You are subscribed to AERNet, The Association for Education and Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org

A great resource I have always shared when working with students with Batten Disease is: Teach or Be Taught (attached). On Sat, Sep 17, 2016 at 4:13 PM, Amy O'Brien <aobrien88@gmail.com> wrote: > Hi Shelley, > > Our team has focused on maintaining skills the student learned for a long > as he would tolerate and then readjust accordingly as the disease > progresses. We found the information in the link below quite helpful. > > http://bdsra.org/wp-content/uploads/2012/01/Teach-Be- > Taught-4th-Ed.-updated-11.07.12.pdf > > Amy O'Brien, MS-ED; TVI, VRT > Adjunct Professor at Dominican College > Special Education Teacher > Teacher of the Visually Impaired > Vision Rehabilitation Teacher > > > LEGAL NOTICE: > > This e-mail transmission, with accompanying records, is intended only for > the use of the individual or entity to which it is addressed and may > contain confidential and/or privileged information belonging to the sender, > including individually identifiable health information subject to the > privacy and security provisions of HIPPA. This information may be protected > by pertinent privilege(s), e.g., attorney-client, doctor-patient, HIPPA, > etc., which will be enforced to the fullest extent of the law. If you are > not the intended recipient, you are hereby notified that any examination, > analysis, disclosure, copying, dissemination, distribution, sharing, or use > of the information in this transmission is strictly prohibited. If you have > received this message and associated documents in error, please notify the > sender immediately for instructions. If this message was received by > e-mail, please delete the original message. > > On Sep 17, 2016, at 1:44 PM, HOLLINGER, KEVIN < > Kevin.Hollinger@fhsdschools.org> wrote: > > Same for me, I have worked with two sisters diagnosed with Batten for the > past 14 years. > I too am willing to chat via phone but what I would like to share with the > list is that you are in a battle to maintain skills, especially functional > skills, as the disease progresses-both in context of the visual impairment > but also the neurological degeneration. > Our teams have work diligently to maintain communication and preserve > better speech for augmentative communication. The involvement/consultation > of a mobility specialist is paramount for as long as the student is mobile, > self-directing movement. > Finally, the family whom I've worked with speak very highly of the > association and family connections at the national level-they absolutely > love attending the yearly conference/training and always bring the team > back ideas and encouragement. > Kevin > > > Kevin J. Hollinger > COMS, M.A., M.Ed, NBCT > FHSD Vision Program > 636-851-6143 > > > On Sep 17, 2016, at 12:31 PM, Nancy Ozinga <NancyOzinga@kentisd.org> > wrote: > > > I also have students with Batten Disease and have accumulated some > information over the years that I would be glad to share with you. Email > me off list with your contact information. > > Nancy Ozinga > > Kent ISD, TCVI > > nancyozinga@kentisd.org > > > Sent from my iPhone > > > On Sep 17, 2016, at 9:56 AM, Shelley Mack <smackbrl@gmail.com> wrote: > > > Does anyone have experience with a child with Batten disease? Is there any > chance the vision loss may act sort of like CVI in reverse? For example, at > one point the child might attend with background complexity or to items > with several colors, but eventually would need a more scripted environment > or single color item, etc. I'd imagine it's different for each child, of > course, but was just sort of looking for some principles to work with. > > > Thanks, > > Shelley Mack > > You are subscribed to AERNet, The Association for Education and > Rehabilitation of the Blind and Visually Impaired Listserv. > > > To post a message to all the list members, send an email to > aernet@lists.aerbvi.org. > > > Address list requests to: aernet-request@lists.aerbvi.org > > > To unsubscribe from this list, go to http://lists.aerbvi.org/ > mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to > unsubscribe. Go to the same address to access the list archives. > > _______________________________________________ > > AERNet mailing list > > AERNet@lists.aerbvi.org > > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > > You are subscribed to AERNet, The Association for Education and > Rehabilitation of the Blind and Visually Impaired Listserv. > > > To post a message to all the list members, send an email to > aernet@lists.aerbvi.org. > > > Address list requests to: aernet-request@lists.aerbvi.org > > > To unsubscribe from this list, go to http://lists.aerbvi.org/ > mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to > unsubscribe. Go to the same address to access the list archives. > > _______________________________________________ > > AERNet mailing list > > AERNet@lists.aerbvi.org > > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > > You are subscribed to AERNet, The Association for Education and > Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to > aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/ > mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to > unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > > You are subscribed to AERNet, The Association for Education and > Rehabilitation of the Blind and Visually Impaired Listserv. > > To post a message to all the list members, send an email to > aernet@lists.aerbvi.org. > > Address list requests to: aernet-request@lists.aerbvi.org > > To unsubscribe from this list, go to http://lists.aerbvi.org/ > mailman/listinfo/aernet_lists.aerbvi.org and follow instructions to > unsubscribe. Go to the same address to access the list archives. > _______________________________________________ > AERNet mailing list > AERNet@lists.aerbvi.org > http://lists.aerbvi.org/mailman/listinfo/aernet_lists.aerbvi.org > > -- Sincerely, Ms. Amber Ricker, M.Ed., B.S.Ed. Itinerant Teacher for the Blind and Visually Impaired *Personal Cell (Voice/Text):* 513.295.2369 | *Google Voice (V/T):* 513.400.5965 *"*What lies behind us and what lies before us are tiny matters compared to what lies within us." ~Ralph Waldo Emerson