http://www.mrrcmedia.org/bb This is a discussion board for the ADVISOR website. ADVISOR stands for Assisting the Development of Visually Impaired Students through Online Resources. en Wed, 08 Sep 2010 10:34:57 GMT vBulletin 60 http://www.mrrcmedia.org/bb/images/misc/rss.jpg http://www.mrrcmedia.org/bb Tue, 12 Dec 2006 21:09:03 GMT From the National Coalition on Deafblindness: December 12, 2006 Dear Coalition Members, A lot has happened since our last communication. Although... From the National Coalition on Deafblindness:

December 12, 2006

Dear Coalition Members,

A lot has happened since our last communication. Although we did not get our budget request included in the FY 07 congressional budgets, we did begin to develop a network. Many of you contacted your representatives and have started to form a relationship with them. We can build upon that. We have new leadership in Congress and the 2008 budget cycle is upon us. This year we are starting earlier and working harder to get the request for increased funding for deafblind services included in both the House and Senate Appropriation bills for the FY 08 budget. That means that we need your help now.

We have two immediate goals. First, we want each of you to contact your representatives by phone or email and ask them to include the funding request in their short list of requests to the Appropriation Committee. Each congressperson and senator can identify three funding priorities for each budget cycle. We need to get several members of each chamber to include increased funding for deafblind services on their priority list.

Next, we need you to meet with your representatives or their staff to talk about why deafblind funding is so important. You can meet with your representatives or their staff in their home districts. If you are able to come to Washington, DC and would like to have a coalition person join you in a meeting, we plan to schedule meetings during the last week of January and the first week of February.

Please keep us in the loop. Send us copies of any letters you write or email us with updates about phone contacts. If you have a meeting in your district, tell us the name of the person with whom you met. We will follow up. If we all work together we can have a much greater impact.

Your congressperson and senators will submit their requests in February. They need to hear from you now.

The Coalition is trying to increase the amount of federal monies allocated to services for children who are deafblind. Specifically, we are seeking an additional $2 million dollars for the Department of Education's Office of Special Education and Rehabilitative Services (OSERS) to address the resource needs of children who are deafblind and their families. Federal monies support both state and national technical assistance programs that provide crucial support to children, their families and their educational staff.

The additional $2 million dollars will provide approximately:

$1.4 million to the state technical assistance projects
$350,000 to support the family-focused activities of the National Consortium on Deaf-Blindness (NCDB)
$250,000 to strengthen personnel preparation programs

Click here for a sample letter If you have any questions or need more information, please call or email. (617) 972-7768 or betsy.mcginnity@perkins.org

Please contact your representatives today, by phone or email. For contact information for your congressperson and senators, go to our website. http://dbcoalition.org/help.htm

Sincerely,

Betsy L. McGinnity

Campaign Coordinator

National Coalition on Deafblindness

betsy.mcginnity@perkins.org

(617) 972-7768 ]]> General Parent to Parent Support Dennis Gotto http://www.mrrcmedia.org/bb/showthread.php?t=38 Fri, 07 Jul 2006 15:12:25 GMT Hello,

I am new here, having found this forum quite by accident. I was doing a Google search and decided to look for "Perkins brailler+forums" and here's this forum. Very nice.

I have been working with brailler repair since 1981. Most of my experience has been obtained through examining the design logic, seeing how the parts work. I got a manual and compared that against my notes.

Thank you for being here.

-Francis Daniels ]]> Perkins Brailler Repair Questions and Answers Francis Daniels http://www.mrrcmedia.org/bb/showthread.php?t=37 Thu, 22 Jun 2006 19:45:10 GMT Hello Everyone! My name is Julie Bowman, and I am the mother of a child with visual impairments. First of all, I want to welcome you to the boards.... Hello Everyone! My name is Julie Bowman, and I am the mother of a child with visual impairments. First of all, I want to welcome you to the boards. I hope that others will join this thread and we can get to know each other. I also hope that I can offer information, advice, or just a shoulder to lean on.

My daughter Mary was diagnosed with visual impairment at 4 months of age. She has suspected ocular albinism as well as cortical visual impairment. For those not familiar with these conditions, the functional result is that Mary's vision is reduced and she also has trouble visually attending (she looks away, rather than at, objects). Mary also has other disabilities, resulting in delays in all areas (gross motor, fine motor, speech -- the whole package!).

Needless to say, I have been through many phases of adjustment (especially since Mary's diagnoses have evolved and changed over her life). I went from shock and disbelief to wanting to "attack" the problem and learn everything I could about visual impairments to meeting other families and getting support and finally to where I am now – enjoying my daughter and living a fairly “normal life.”

Mary is now 2&1/2 and a joy to be around. She has made so much progress in these past 2 years, I can hardly believe it. That doesn't mean that she doesn't still have big challenges ahead, but I know she (and I) will handle them just like we have handled everything else -- one step at a time.


I think the key to our success is connecting with other families. I was fortunate to be able to join a Mothers’ group of absolutely fantastic moms. Besides being great role models, they shared information regarding therapies, support groups, educational options, medical issues, and so much more. For those who don't have a group, we have the wonderful resource of the internet to connect us, and so here we are on these boards. I hope that others will share their stories -- there are many of us going through the same things, and by letting each other know that we are out there, no one feels alone:) ]]> General Parent to Parent Support JBowman http://www.mrrcmedia.org/bb/showthread.php?t=36 Thu, 08 Sep 2005 20:33:42 GMT Hello from the ADVISOR Coordinating Center! Are you satisfied with the ADVISOR website? Tell us about it! We now have an online survey where you can... Hello from the ADVISOR Coordinating Center! Are you satisfied with the ADVISOR website? Tell us about it! We now have an online survey where you can rate the site and let us know where we can improve! Please help us spread the word by telling your doctors, your teachers and your parents about the survey and encourage them to take it. The link is http://www.e-advisor.us/survey/

Thanks again! ]]> SOD Support - Parent to Parent advisor http://www.mrrcmedia.org/bb/showthread.php?t=35 Thu, 11 Aug 2005 19:59:40 GMT WMUR channel 9 and Jennifer Vaughn presented a lovely story about my daughter Josey and her disease ONH/SOD. It was brief, but really nice and some... WMUR channel 9 and Jennifer Vaughn presented a lovely story about my daughter Josey and her disease ONH/SOD. It was brief, but really nice and some of the people and agencies that I would have liked to of been mentioned weren't, but I don't edit and have final say and time was limited! All in all, they did a fabulous job raising awareness for ONH and how blind people are no less intelligent that sighted, (of course depending on multiple handicaps or other diseases combined) and that they can lead full, independent happy lives! I am very proud and thrilled that WMUR came to our house with a special report on Josey. I really hope it will educate the public about ONH and teach people that with the correct medications, services, therapies and just plain old everyday fun, our kids (and adults) can lead a fulfilling and enriching life. I also wanted to teach my daughter that ?Mommy? is her advocate now, but as she gets older she needs to go out and face the world, stick up for herself and fight for everything she wants because I won't be around forever :(
Best wishes to all!
Lucy
PS. For any locals to NH, it will be aired again on the weekend news! ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=34 Sun, 07 Aug 2005 14:33:10 GMT HI, just wanted to let you all know about a puppet show for kids that is presented at schools to raise awareness about kids with certain challenges... HI, just wanted to let you all know about a puppet show for kids that is presented at schools to raise awareness about kids with certain challenges and disabilities (ie visual impairments/blind). It is used to educate the other kids about a child's condition in a "fun" setting. This way they hopefully learn at young age, not to discriminate and poke fun.
I'm thinking about doing this for Josey in 1st grade but still need to make contact and see what they suggest. Thought I'd p@ss this on though as it looks great!
Lucy :)
It's called Kids on the Block http://www.kotb.com/ ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=33 Sat, 06 Aug 2005 03:36:13 GMT Josey's "story" will be featured on NH channel 9 WMUR next Wednesday August 10th on the 11pm news!
I really hope it will help raise awareness for ONH/SOD. I haven't seen it, but news anchor Jennifer Vaughn (who is lovely by the way) called today and said it is ready. I have no idea what it will be like! :oops:

It will also run the following day and the weekend.
Thanks for letting me share! :wink:
Lucy ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=32 Fri, 05 Aug 2005 03:35:36 GMT Hi! No news yet on when my interview with WMUR will be aired, but am so excited to be able to raise awareness about ONH/SOD. I have a question for... Hi! No news yet on when my interview with WMUR will be aired, but am so excited to be able to raise awareness about ONH/SOD.
I have a question for parents of preschoolers who are receiving school service during the regular school year. How many hours of O&M is your child receiving at school? I'm just going through my daughter's IEP and she has 1 and a half-hours direct and half an hour consult with her teacher. Am wondering if this is average for an almost 5 year old. I know every child is different and may need more or less time, but just wanted some input from parents (or professionals!) about the average number of hours a week that seems appropriate. Thanks for any insight!
Also, I would like to have a consultant evaluate my daughter's progress at school maybe every couple of months. Somebody from the outside who specializes in blind children's education and development, who could tell myself and the teachers where Josey may need to be more "challenged" in certain areas. This way we could keep up- to-date on her progress instead of just the typical IEP. Any ideas or advice would be so appreciated. I have connected to my local Blind agency and they have recommended Perkins. I also wanted to know how to incorporate this into an IEP, so it is covered by the school. Am I dreaming?! Josey is the only blind child in the school and I think the only one ever! or maybe for a long time anyway. I just want to be sure she will be progressing, not just "satisfactory" to school guidelines but being challenge constantly to use her full potential as recommended by a consultant. Thanks so much for reading and any advice.
Lucy- I know school stuff already :( can't believe school is creeping up and I'm starting to panic! :shock:
]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=31 Thu, 21 Jul 2005 01:19:43 GMT Hi, I emailed our local news station WMUR in NH and asked if they would be willing to help raise awareness about SOD/ONH by coming to our house and... Hi, I emailed our local news station WMUR in NH and asked if they would be willing to help raise awareness about SOD/ONH by coming to our house and meeting Josey. A new's anchor called me within a few hours and we are tentatively set up for next Tues. I don't think it will be live (Thank Godness!) but am still nervous as ever! Will post details.
Also for you parents or adults with ONH/SOD who haven't filled out the survey from the One Small Voice Foundation about were you lived before and during you're pregnancy (or where your mother lived) and would like to, this is the link;

http://www.onesmallvoicefoundation.org/borchert.html

You can be completely anomynous, and it really helps Dr. Borchert and his team with their research for ONH/SOD. We met him at the FOCUS families conference in NM and he puts his heart and soul into this disease. Filling out this survey would help him significantly.
Thanks! :)
Lucy- Anybody can contact their local news station like I did too :wink:
Lets help raise awareness and help our kids and adults- they deserve it so much. ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=30 Mon, 11 Jul 2005 12:05:33 GMT My older (sighted) son Joa and I got a bee under our bonnet about helping National Braille Press in its overtime efforts to provide braille copies of... My older (sighted) son Joa and I got a bee under our bonnet about helping National Braille Press in its overtime efforts to provide braille copies of the new Harry Potter book (Harry Potter and the Half-Blood Prince) as close to the publication date of the print copies as possible.

We made a little web page explaining the whole thing. If you're interested, check it out at
http://www.justgiving.com/pfp/BrailleHarryPotter

It's pretty cool because we've had braille books around for 16 month-old Lars, and Joa's become quite interested in them, so this is a great project for him.

Lisa ]]> SOD Support - Parent to Parent Lisa http://www.mrrcmedia.org/bb/showthread.php?t=29 Mon, 04 Jul 2005 04:01:29 GMT Hopefully, this will bring you right to the page on MSN. I put together a bunch of resource links to bring to a conference about SOD, but wanted to... Hopefully, this will bring you right to the page on MSN. I put together a bunch of resource links to bring to a conference about SOD, but wanted to get them online somehow for everyone. It has to be downloaded from the MSN Groups site and enlarged with WORD. I am gingerlocket00, and the Group is SOD/ONH Resource Links.

http://groups.msn.com/SODONHResource...Links&fc_a =0
or if that doesn't work you can join the group at;

http://groups.msn.com/SODONHResourceLinks/join

Have a GREAT summer!
Lucy- Off to NM in 2 days for conference! :lol: ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=28 Wed, 15 Jun 2005 03:29:21 GMT Just need to find one of "Dad" as he is always taking the pics.!

http://www.care2.com/c2c/photos/view...05/Meet_Josey_


Lucy ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=27 Sun, 12 Jun 2005 16:03:37 GMT Well, after a generous grant from a local agency for the blind and some kind donations from my mother's work, a church, and a possible state grant. We are hoping that we will be able to attend the SOD/ONH conference in Alberquerque, NM. Fingers crossed! It means so much to us. :D
I hope to be able to further my knowledge about SOD/ONH by being able to meet and listen to some of the country's finest specialists in the field of Opthalmology, Ped. Endocrinology, and Behavioral Specialty (much needed!)
I also plan on asking a lot of questions as far as research, medical advancements and behavior issues in regards to SOD.
The conference is far from home, so I am a little nervous and we have to leave our newly adopted dog! I'm starting to pack and have all meds/syringes labeled. I am now just worried about the plane trip and how Josey will adjust to flying. Although I'm the nervous flyer, I hope that she doesn't get too upset and we can make a fun game out of it somehow? Any ideas?
Well, I will make this brief, but wanted to ask if anybody had any specific questions they would like me to ask any of the specialists or other parents. Please let me know, I'd be more than happy! Hope you are all enjoying this very hot, humid summer so far! We are starting Hippotherapy in a few weeks and am hoping it won't be so hot, but it is summer! :wink:
Would love any responses or requests. I have been very busy with school IEP's and meetings but check the site most days.
Take care,
Lucy 8) ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=26 Thu, 19 May 2005 12:46:52 GMT Hi, It's been crazy around here with a new dog, new IEP and new school preparations for next year. Josey will be out of Special Ed. preschool and back to her local home school with a TVI, O&M and a one on one!
I have also been desperately trying to get some financial help with funding for conference for ONH/SOD. This conference is put on by FOCUS FAMILIES and will be on July 7-11, 2005 in Alberquque, NM. They have one every year and NM is far from Concord, NH but they are having some great speakers. Dr. Mark Borchert, an Opthalmologist from CHLA, who specializes in ONH/SOD, there will also be an Endocrinologist and a Behavioral Specialist, which we definately need! The registration fee is $35 for the family if sent by June 10, 2005. The hotel has reduced its rate for FOCUS FAMILIES to I believe $89+ tax per night. Now it's finding a cheap but safe flight! Anyway, I will post the info. for any families interested. I've heard it's a fabulous time and meeting other families, for me, would be a first. The site is http://www.focusfamilies.org/focus/general_info.asp We hope to go and hopefully meet some wonderful families. As much as I do not like having to ask local foundations, and charities for help, but it is for my daughter, Josey's benefit too. It will offer a great wealth of knowledge that will be critical to her future, and ours!
Happy Spring!
Lucy 8) ]]> SOD Support - Parent to Parent Lucy Murayda http://www.mrrcmedia.org/bb/showthread.php?t=25 Mon, 28 Mar 2005 20:34:35 GMT One of my kids is a 4 year old that had recent brain surgery resulting in a left homonymous hemianopia. Since the trama is new he is still in the... One of my kids is a 4 year old that had recent brain surgery resulting in a left homonymous hemianopia. Since the trama is new he is still in the process of making his own adaptations to view his left hemispheres. A concern I have is getting him to track left to right since he leaves out half of the page and prefers right to left, this would be OK if I were teaching Chinese but English it is. Does anyone have comments or experience working with this population and would like to share their experience.
thanks ]]> Paul Doyle http://www.mrrcmedia.org/bb/showthread.php?t=24