Blind on Blind Podcast

I was so pleased to be asked to speak about CVI with Maurice Wilkey and Jeff Migliozzi on their radio program Blind on Blind. Here is the link to that interview.

https://www.mixcloud.com/radioperkins/blind-on-blind-ellen-mazel-060618/

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5 comments

  1. My 9 yr old daughter Arianna was diagnosed by Dr Kran 7/01/14 Getting services in her school has been a challenge. Very excited to see a growth in this field. Her IEP is not helping – CVI is not understood – the TVI keeps making reference to the vision which as you know is not the issue. Arianna will be attending Innovation Academy Charter School in the Fall. They are awesome and eager to learn how to work with Arianna. They currently do not have a TVI Arianna is their first visually challenged student. Can you recommend a TVI who can work with them? Or does Perkins offer training for educators and parents? Arianna has made great strides I am a very inventive parent and somehow I have done many things “right”. I have been a foster parent for over 40 yrs with special needs kids my focus. I am now retired – I parent with what I am told is a sixth sense 🙂 I’m 69 my husband is 64 we have dozens of grown kids. I am (we are) eager to learn as much as I can about CVI – I find it fascinating and challenging. I would also like to – and Aimee Voleti SPED at Innovation agrees – find a way to also educate Arianna’s peers – her staring-head tilts etc have a negative effect on peer relationships. Arianna is physically active, dances, sings, acts in plays – she has been a cast member of Applause Academy for 3 yrs. she also took dance for 4 yrs – to help with her spacial awareness. We had a bounce house for years and now a trampoline to help with balance and body mobility, She loves to run cross country with an older child and does well as long as Dee calls out dip, stump, rock etc. rough terrain is a challenge, Looking fwd to hearing from you. Thank you for making CVI your challenge.

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  2. Hi Elaine. Perkins does do CVI Range assessments of functional vision and creates a report to make sure the goals, objectives, accommodations and methodologies match the assessed needs. You can contact Evaluations at Perkins http://www.perkins.org/school/independent-evaluations. I’m glad Dr. Kran was knowledgeable and got that diagnosis of CVI for your daughter. Great first step!
    Perkins also offers customized online trainings for school systems and teams and you can contact Mary Zatta at https://workshops.perkinselearning.org
    There are several online webinars and classes about CVI on the CVI Hub at Perkins as well.

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    1. Hi   – do you know Kara Gagnon – New England Low Vision?  Arianna had an awesome visit with her back in 10/16 Kara also said CVI. Her report was to be part of Arianna’s IEP, Kara was present at the mtg via telephone.  However, the Chelmsford SPED program decided to ignore her report and recommendations because the TVI Susan Cantos and the mobility specialist Nan Alphen convinced SPED that Arianna’s vision is fine and she just has concentration and cognitive issues.  So her IEP only has recommendations for field trips, and acclimating to new classrooms etc. IEP mtg with 3 yr evaluation held last Thursday 6/14/18 only had Dr Kran’s info and they refused to even discuss any of Kara’s report.  They also reported that Arianna has cognitive and concentration issues and has no visual delays. Arianna had eye exam on 5/31 no depth perception, very low vision left eye.  Peripheral vision also very small – Dr Suraj Afshar.  Susan Cantos sat at the IEP mtg and said Arianna has full range of vision, no sensitivity to light, and when she tested her for CVI she scored 9.9 thus not an issue.  I was told after the meeting to “stop beating a dead horse”. I have been very frustrated – Arianna is also frustrated and has spent the last 4 yrs – 1st-4th grade in the SPED program with an IEP for cognitive delays.The evaluation you refer to in your e-mail – who should I contact to help financially? Would Ma Commission of the Blind cover any of it?  Arianna has Mass health because she was adopted from DCF however, they will not cover her glasses – nor testing in the past. I have copies of all reports, can I use them to apply for evaluation?  She is between schools, for the Summer so getting a referral will not be possible.  Innovation Academy is eager to help, but technically Arianna is not a student until September and Chelmsford does not believe it is an issue.  I do not want to wait until School starts in the Fall.I am retired and we currently have one income. (I retired from foster care so not much social security).Elaine

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  3. I got this site from my buddy who told me regarding this web page and now this time I am browsing this web page and reading very informative posts at this place.

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