[blindkid] More than just blindness

Wed Jul 9 23:53:55 UTC 2014

I have a thought and wonder who to present it to. I'd even be willing to be a worker full-time. My thought is, could we have a room in child-care just for the Pauls, Jesses and Davids of the world? A room where the parents don't have to worry about how many toys will be eaten or chairs tipped over. A room where spinning in circles or rocking on your head all day is okay. Aroom where a tantrum isn't going to clear the room and leave the rest of the kids crying. A room where no activities really need to be planned because the kids won't want to do them any way.
Barbara

Sent from my iPhone

> On Jul 9, 2014, at 6:40 PM, "Bernadette Jacobs via blindkid" <blindkid at nfbnet.org> wrote:
> 
> God Bless you Penny.  Ya just don't get it do ya Darling?  All the books in the world and all the human instruction can be a wonderful thing?  But Honey, I ask you.  What about these kids who actually exist?  When we bring our children with these multiple handicaps/issues along with us because they're actually part of our families, The activities and childcare that are provided for the families is Okay for the typical children.  But what about these children with other issues are left to fall through the cracks? But, that's Okay?  Hmmm.
> 
> As for Natalie, I can't think of a dearer lady.  I have the utmost respect for her experteese and advice.  I feel it such an honor and privilege to know her and call her a very dear friend to me and my husband.  She's spent time with David and has struck up a nice little friendship with David.  She is one very caring lady and she's one of the hardest, profficient people I know.  As for Carlton Walker, she's another very bright, dear lady.  Her daughter and our daughter have also struck up a good friendship.  But, as Barbara has said, where David is concerned, David appears to scare the tar out of the rest of the world.  That's putting it nicely.  But this, does at times, forces me to consider when and where we go as a family and sometimes, I do stay back and let Bill take Virginia.  For, sometimes, I just don't think my heart can stand anymore hurt.  Some days I can let it roll off.  But there are others, I simply can't. After all, I might actually be human and have feelings too?  And they're not in a book or in some training???
> 
> Bernie
>> On 7/9/2014 2:48 PM, Penny Duffy via blindkid wrote:
>> Lelena,
>> 
>> I read through what you said. If i missed anything please let me know.
>>  Many of the parents i assist in my state experiance more than one
>> disability not just blindness.  I believe strongly that these children
>> heavily discriminated against in educational settings.  Very few educators
>> feel a child with more than one disability including blindness should be
>> taught braille at all which is extremely wrong considering they would never
>> say the same thing about  a child with non blindness related disabilities.
>>  Its an understanding that literacy is important to all.
>> 
>> The NOPBC always works hard at trying to build program that will benefit
>> all kinds of different kids and different learners. I hope you never feel
>> we are are not trying to serve your needs.
>> 
>> Below is the NOPBC works shops from this years conference.  there was two
>> workshops which were geared directly for parents of children with multiple
>> disabilities.   I would challenge that ALL the rest of the workshops would
>> benefit parents with children with multiple disabilities. also. including
>> the college one.  The NOPBC programming is primarily our parent conference
>> and we sponsor Future Reflections which regularly  feature stores about all
>> kids of different kids.
>> 
>>  Also if you are talking about NFB direct programming like the great STEM
>> programs I am sure Natalie Shaheen, Director of Education at the NFB
>> Jernigan Institute would love to hear some ideas.  I happen to know this
>> area is VERY important to her.
>> Let me know if I can be have anymore help.  I am very passionate in this
>> area.
>> -Penny Duffy
>> 
>> --
>> 
>> Independence in the Classroom
>> Tools, tips, and techniques for setting up the classroom and training the
>> student for independent functioning. Instructor: Jackie Anderson, Teacher
>> of Blind Students
>> 
>> Independent Movement & Travel for Children with Additional Disabilities
>> Working toward maximum independence and self-determination for the child
>> with additional disabilities. Instructor: Denise Mackenstadt, NOMC
>> 
>> Low Vision Toolbox
>> Useful items for low vision students and how to determine the most
>> efficient method for the task. Instructor: TBA
>> 
>> First Steps
>> Exploration and independent movement and travel in early childhood.
>> Instructor: Mary Jo Hartle, NOMC, Teacher of Blind Students
>> 
>> Accessible Technology
>> Using accessible technology for meaningful participation in school, at
>> home, and in the community. Instructor: Eric Guillory, Director, Youth
>> Services, LA Center for the Blind
>> 
>> Independence Skills at Home & in the Community
>> Teaching and supporting the development of independence skills for full
>> participation in home and community life. Instructor: Mary Jo Hartle, NOMC,
>> TBS
>> 
>> Hands Off!
>> Honoring the child's right to personal space and control over his/her body.
>> Instructor: Carlton Walker, Teacher of Blind Students, President, NOPBC
>> 
>> Independent Movement & Travel for the School-Age Student
>> High expectations, real-life goals, and how to achieve them in the area of
>> independent movement and travel. Instructor: TBA
>> 
>> Tactile Graphics—The Good, the Bad, & the Ugly
>> The basics of creating a good tactile graphic that will really work for the
>> blind child. Instructor: Carol Castellano, Director of Programs, NOPBC
>> 
>> I Get Around
>> Getting around independently when you do not drive. Instructors: Pam Allen,
>> Director, LA Center for the Blind; Roland Allen, NOMC
>> 
>> Low Vision Technology
>> From low tech to high tech, learn about the many options for the low vision
>> student. Instructor: Janet Bernhardt, Owner, Low Vision, Etc.
>> 
>> Saying It My Way
>> Encouraging communication, learning, and play in children with
>> communication needs. Instructor: Natalie Shaheen, Director of Education,
>> NFB Jernigan Institute
>> 
>> Social Skills for the School-Age Child
>> Encouraging appropriate social interaction and play. Instructor: Sheena
>> Manuel, Outreach Specialist, Professional Development and Research
>> Institute on Blindness
>> 
>> How to Set Up a Saturday School
>> Empowering families to learn and teach the skills of independence.
>> Instructor: Jackie Anderson, Teacher of Blind Students
>> 
>> College Checklist: Is Your Blind Child Ready? Are YOU Ready?
>> Preparing for heading off to college—what parents and students need to
>> know, with a special visit from one of "the roommates from hell."
>> Instructors: Kim Cunningham, second vice president, NOPBC; Kayleigh Joiner,
>> Student; Arielle Silverman, Fellow, University of WA; Debbie Kent Stein,
>> Editor, Future Reflections
>> 
>> Unified English Braille (UEB)
>> It's new. It's coming. What is it, how will the transition be made, and
>> what will it mean to your child? Instructor: Casey Robertson, Teacher of
>> Blind Students
>> 
>> IEP Basics for Parents of Blind/VI Students
>> The sections of the IEP, essential assessments, how assessment information
>> is used, how to be an active and effective participant. Instructor: Carlton
>> Walker, Attorney, Teacher of Blind Students
>> 
>> IEP Development and Legal Process Overview
>> Do's & Don'ts for the IEP meeting; preparing for possible mediation, due
>> process, appeal, etc; overview of the legal process; how to prepare for a
>> due process hearing so you don't have to have one! Instructor: Carlton
>> Walker, Attorney, Teacher of Blind Students
>> 
>> 
>> Spanish Language Session
>> This session will cover a range of subjects of interest to parents of blind
>> children. Instructor: Conchita Hernandez, Special Educator
>> 
>> 
>> On Mon, Jun 30, 2014 at 10:19 AM, Lalena Fayre via blindkid <
>> blindkid at nfbnet.org> wrote:
>> 
>>> As I read through my latest issue of Future Reflections, I was struck with
>>> a further sense of isolation. The same holds true when I read this listserv
>>> and review the agenda of the upcoming national conference.
>>> 
>>> My son is totally blind with multiple other disabilities - nonverbal and
>>> global developmental delays that impact every area. I'm fortunate to have a
>>> good foundation and understanding of blindness education. But when you add
>>> the other issues to the blindness, one is struck with how much blindness
>>> complicates things. For example, typical adaptive communication devices are
>>> vision based. Another, pre-Braille work is important but after 3 years of
>>> it and no significant progress made, you are forced to deal with functional
>>> skill development which the therapist don't know how to do with a blind
>>> child, let allow a blind cognitively delayed child.
>>> 
>>> I turn to the NFB for support and resources, yet publications are full of
>>> typically developed children who happen to be blind. I call my local
>>> organizations here in the bay area (which I know are inline with NFB
>>> philosophy) looking for social opportunities for my son, but he can't
>>> participate because of his developmental delays.
>>> 
>>> At the end of the day I'm left wondering......am I the only parent of a
>>> child with multiple disabilities, developmental delays, AND blindness? Are
>>> the majority of blind child typically developed? And where do I turn for a
>>> network of parents who may understand?
>>> _______________________________________________
>>> blindkid mailing list
>>> blindkid at nfbnet.org
>>> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>>> To unsubscribe, change your list options or get your account info for
>>> blindkid:
>>> 
>>> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/pennyduffy%40gmail.com
>> _______________________________________________
>> blindkid mailing list
>> blindkid at nfbnet.org
>> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
>> To unsubscribe, change your list options or get your account info for blindkid:
>> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/bernienfb75%40gmail.com
> 
> 
> _______________________________________________
> blindkid mailing list
> blindkid at nfbnet.org
> http://nfbnet.org/mailman/listinfo/blindkid_nfbnet.org
> To unsubscribe, change your list options or get your account info for blindkid:
> http://nfbnet.org/mailman/options/blindkid_nfbnet.org/poetlori8%40msn.com